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# Loeys-Dietz Syndrome Foundation Canada

## Sitemaps

- [XML Sitemap](https://loeysdietzcanada.org/sitemap.xml): Contains all public & indexable URLs for this website.

## Posts

- [Semaine de sensibilisation à la dissection aortique du 14 au 20 septembre 2025](https://loeysdietzcanada.org/aortic-dissection-awareness-week-september-14-20-2025/) - Les principales organisations nord-américaines de sensibilisation aux dissections aortiques s'unissent pour sauver des vies pendant la Semaine de sensibilisation aux dissections aortiques (du 14 au 20 septembre 2025) Sept grandes associations nord-américaines de sensibilisation à la dissection aortique s'unissent pour la première fois à l'occasion de la Semaine de sensibilisation à la dissection aortique
- [Aortic Dissection Awareness Week (September 14 – 20, 2025)](https://loeysdietzcanada.org/aortic-dissection-awareness-week-september-14-20-2025/) - Seven leading North American nonprofits dedicated to aortic dissection awareness are uniting for the first time during Aortic Dissection Awareness Week 2025, urging the public to think “STAT” and recognize the signs of aortic emergencies to save lives. Aortic Hope, Genetic Aortic Disorders Association Canada (GADA), The John Ritter Foundation for Aortic Health, the Loeys-Dietz Top North American aortic-awareness organizations stand together to save lives during Aortic Dissection Awareness Week (September 14 – 20, 2025)
- [Bulletins d’information : Notre nouveau site sur le SLD est arrivé](https://loeysdietzcanada.org/newsletter-our-new-lds-website-is-here/) - Nouvelle année, nouveau site Web ! Vous trouverez de nouvelles informations sur le syndrome de Loeys-Dietz (SLD), des ressources éducatives mises à jour, de nouveaux outils de point de service et de calcul des risques pour les cliniciens, et bien plus encore sur le nouveau site Web de la Fondation du syndrome Loeys-Dietz Canada.Visitez-nous dès
- [Newsletter: Our New LDS Website is Here](https://loeysdietzcanada.org/newsletter-our-new-lds-website-is-here/) - New year, new website! Find new information on Loeys-Dietz syndrome (LDS), updated educational resources, new point-of-care and risk-calculating tools for clinicians, and much more at the Loeys-Dietz Syndrome Foundation Canada’s new website.Visit us today at www.loeysdietzcanada.org.
- [Bulletin d’information : Vous pouvez faire la différence](https://loeysdietzcanada.org/newsletter-you-can-make-a-difference/) - En faisant un don, vous pouvez vous joindre à nous pour soutenir les personnes vivant et travaillant avec le syndrome de Loeys-Dietz (SLD).En quoi consiste notre soutien ? Nous fournissons une ligne d’assistance gratuite pour le SLD, un soutien par les pairs, un accès à des centaines de ressources sur le SLD, de l’aide aux
- [Newsletter: You Can Make a Difference](https://loeysdietzcanada.org/newsletter-you-can-make-a-difference/) - By making a donation, you can join us in supporting people living and working with Loeys-Dietz syndrome (LDS).What does our support look like? We provide a free LDS helpline, peer support, access to hundreds of LDS resources, help for medical professionals looking to build multidisciplinary clinics, and more!Donate and make a difference today.
- [Bulletin d’information : Nos points forts en matière du SLD en 2022](https://loeysdietzcanada.org/newsletter-our-2022-lds-highlights/) - Cette année, votre soutien généreux nous a permis de faire une grande différence dans la communauté du syndrome de Loeys-Dietz (SLD).Que vous ayez communiqué avec nous pour obtenir de l’aide ou que vous nous ayez consacré du temps, fourni des commentaires ou fait un don, nous sommes honorés de vous compter parmi nous. Nous vous
- [Newsletter: Our 2022 LDS Highlights](https://loeysdietzcanada.org/newsletter-our-2022-lds-highlights/) - This year, your generous support has helped us to make a big difference in the Loeys-Dietz syndrome (LDS) community.Whether you’ve contacted us for help or given time, feedback, or a donation, we are honored to have you here. From the bottom of our hearts, thank you.Keep reading to discover what we’ve accomplished together.
- [Bulletin d’information : Novembre est le mois de la sensibilisation aux MII](https://loeysdietzcanada.org/newsletter-november-is-ibd-awareness-month/) - En l’honneur du mois de la sensibilisation aux MII (maladies inflammatoires de l’intestin), nous nous sommes associés à la Fondation canadienne pour la promotion de la santé digestive (Canadian Digestive Health Foundation) afin de sensibiliser le public et de vous fournir les dernières informations sur les MII et autres problèmes gastro-intestinaux chez les personnes atteintes
- [Newsletter: November is IBD Awareness Month](https://loeysdietzcanada.org/newsletter-november-is-ibd-awareness-month/) - In honour of IBD (Inflammatory Bowel Disease) Awareness Month, we are teaming up with the Canadian Digestive Health Foundation to raise awareness and bring you the latest information on IBD and other gastrointestinal concerns for people with Loeys-Diez syndrome (LDS).
- [Bulletin d’information : Lauréats du prix Impact LEAP](https://loeysdietzcanada.org/newsletter-leap-impact-award-recipients/) - La Fondation du syndrome Loeys-Dietz Canada est fière d’annoncer les lauréats 2022 de son premier prix Impact LEAP.Félicitations à Nairy Khodabakhshian, Dre Pei-Yu Chen, Dre Michelle Keir et Dre Gauri Karur !Les lauréats de 2022 étudient une variété excitante de sujets liés au syndrome de Loeys-Dietz (SLD) : l’exercice pédiatrique, le traitement des os, la
- [Newsletter: LEAP Impact Award Recipients](https://loeysdietzcanada.org/newsletter-leap-impact-award-recipients/) - The Loeys-Dietz Syndrome Foundation Canada is proud to announce the 2022 recipients of our first LEAP Impact Award.Congratulations to Nairy Khodabakhshian, Dr. Pei-Yu Chen, Dr. Michelle Keir, and Dr. Gauri Karur!The awardees are investigating an exciting variety of topics related to Loeys-Dietz syndrome (LDS): pediatric exercise, bone treatment, quality of life, and cardiac imaging. We
- [Bulletin d’information : Passage des soins pédiatriques aux soins pour adultes](https://loeysdietzcanada.org/newsletter-transitioning-from-pediatric-to-adult-care/) - Lorsque les jeunes atteints du syndrome de Loeys-Dietz ou d’autres maladies chroniques complexes vieillissent, ils passent des services de santé pédiatriques aux services de santé pour adultes. Ce changement peut soulever des questions telles que :« À quoi dois-je m’attendre lorsque mon enfant effectue la transition ? »« Que recommandent les experts ? »« Où
- [Newsletter: Transitioning from Pediatric to Adult Care](https://loeysdietzcanada.org/newsletter-transitioning-from-pediatric-to-adult-care/) - As youth with Loeys-Dietz syndrome or other complex, chronic conditions grow older, they transition from pediatric to adult health services. This change may raise questions such as:“What should I expect when my child transitions?”“What do experts recommend doing?”“Where can I find resources for my family?”In this issue, we provide answers to these questions as well
- [Bulletin d’information : Le syndrome de Loeys-Dietz et l'école](https://loeysdietzcanada.org/newsletter-school-and-loeys-dietz-syndrome/) - La rentrée scolaire approche et les familles touchées par le SLD se posent des questions : comment se préparer, qu’est-ce que l’école devrait savoir, et bien plus.Dans ce numéro, nous partageons des réponses, des ressources et un message de notre directrice générale, Jida.
- [Newsletter: School and Loeys-Dietz Syndrome](https://loeysdietzcanada.org/newsletter-school-and-loeys-dietz-syndrome/) - As the school year approaches, LDS families may have questions – about how to prepare, what schools should know, and more.In this issue, we provide answers, suggest resources, and share a message from our executive director, Jida
- [Bulletin d’information : Voyager avec le syndrome de Loeys-Dietz](https://loeysdietzcanada.org/newsletter-travelling-with-loeys-dietz-syndrome/) - Que ce soit pour le plaisir ou pour des soins médicaux, vous allez peut-être voyager cet été. Voyager avec un problème de santé tel que le syndrome de Loeys-Dietz peut être compliqué, mais peut aussi être plus facile avec le soutien et la planification appropriés.Dans ce numéro, nous partageons :des conseils pour votre voyage ;les
- [Newsletter: Travelling with Loeys-Dietz Syndrome](https://loeysdietzcanada.org/newsletter-travelling-with-loeys-dietz-syndrome/) - Whether for fun or for medical care, you may find yourself traveling this summer. Travelling with a medical condition like Loeys-Dietz syndrome can be complicated – but it can be made easier with the right support and planning.In this issue, we share:tips for your trip;two travel advocates with Ehlers-Danlos syndrome;our LDS helpline – here for
- [Bulletin d’information : Le mois de juin est le mois de sensibilisation au SLD](https://loeysdietzcanada.org/?p=9144) - Joignez-vous à nous pour souligner le mois de la sensibilisation au SLD ! Ce mois constitue une occasion unique de sensibiliser les gens au syndrome de Loeys-Dietz et de souligner les personnes qui vivent avec le SLD ainsi que leurs réseaux de soutien.Pourquoi est-il important de sensibiliser les gens ? La sensibilisation permet :d’accroître les
- [Bulletin d’information : Notre ligne d'assistance du SLD est arrivée !](https://loeysdietzcanada.org/newsletter-our-lds-hotline-is-here/) - La Fondation du syndrome de Loeys-Dietz du Canada est heureuse d’annoncer la mise en place d’une nouvelle ligne d’assistance pour la communauté du syndrome de Loeys-Dietz (SLD) !Avez-vous des questions sur le SLD ? Recherchez-vous un soutien par les pairs ou des ressources ? Appelez notre ligne d’assistance téléphonique dès aujourd’hui au 1-888-LDS-FCAN.Continuez à lire
- [Newsletter: Our LDS Hotline is Here!](https://loeysdietzcanada.org/newsletter-our-lds-hotline-is-here/) - The Loeys-Dietz Syndrome Foundation Canada is excited to announce a new hotline for the Loeys-Dietz syndrome (LDS) community!Do you have questions about LDS? Are you looking for peer support or resources? Call our LDS hotline today at 1-888-LDS-FCAN.Keep reading to discover what our hotline has to offer and what people with LDS have to say
- [Bulletin d’information : La FSLD du Canada recherche des bénévoles](https://loeysdietzcanada.org/newsletter-ldsfc-is-looking-for-volunteers/) - La Fondation du Syndrome de Loeys-Dietz du Canada (FSLD du Canada) recherche des bénévoles pour lire des articles scientifiques et nous aider à élargir notre base de données OIMR !
- [Newsletter: LDSFC is Looking for Volunteers](https://loeysdietzcanada.org/newsletter-ldsfc-is-looking-for-volunteers/) - Loeys-Dietz Syndrome Foundation Canada (LDSFC) is looking for volunteers to read scientific articles and help us expand our GRIP database!
- [Bulletin d’information : C'est de nouveau la saison... des recettes sans allergènes](https://loeysdietzcanada.org/newsletter-tis-the-season-for-allergy-friendly-recipes/) - Alors que nous nous préparons à la saison des Fêtes, nous allons explorer les maladies allergiques et les meilleures recettes sans allergènes. Nous aimerions également remercier nos extraordinaires bénévoles et couvrir le lancement prochain de nos quatre premiers prix Impact dans le cadre du programme LEAP.
- [Newsletter: 'Tis the Season...for Allergy-Friendly Recipes](https://loeysdietzcanada.org/newsletter-tis-the-season-for-allergy-friendly-recipes/) - In preparation for the upcoming holidays, we explore allergic disease and the best allergy-friendly recipes. We also thank our amazing volunteers and cover the upcoming launch of our first 4 LEAP Impact Awards.
- [LDSFC at the 2025 ICOI Conference](https://loeysdietzcanada.org/ldsfc-at-the-2025-icoi-conference/) - This event brought together a diverse group of dental professionals, offering a platform to raise awareness about Heritable Aortic Disorders and their impact .
- [De rare à reconnu - FSLDC à la 29e Canadian Connective Tissue Conference (CCTC)](https://loeysdietzcanada.org/from-rare-to-recognized-ldsfc-at-the-29th-canadian-connective-tissue-conference-cctc/) - Du 26 au 28 mai 2025, Loeys-Dietz Canada a fièrement participé à la 29e Canadian Connective Tissue Conference (CCTC), qui s’est tenue à Montréal, au Québec. En tant que commanditaire de cet important rassemblement scientifique, la FSLDC a eu l’honneur de contribuer à une conférence réunissant les plus grands chercheurs, cliniciens et partenaires de l’industrie
- [From Rare to Recognized - LDSFC at the 29th Canadian Connective Tissue Conference (CCTC)](https://loeysdietzcanada.org/from-rare-to-recognized-ldsfc-at-the-29th-canadian-connective-tissue-conference-cctc/) - From May 26th to 28th, 2025, Loeys-Dietz Canada proudly participated in the 29th Annual Canadian Connective Tissue Conference (CCTC), held in Montreal, Quebec. As a sponsor of this important scientific gathering, LDSFC was honoured to contribute to a conference that brings together Canada’s leading researchers, clinicians and industry partners to advance knowledge of connective tissue
- [À quoi ressemble la scoliose avec le SLD et d’autres troubles du tissu conjonctif ?](https://loeysdietzcanada.org/what-does-scoliosis-look-like-with-lds-other-connective-tissue-disorders/) - À quoi ressemble la scoliose avec le syndrome de Loeys-Dietz et d’autres troubles du tissu conjonctif ?Qu’est-ce que la scoliose ?La scoliose est une déformation vertébrale impliquant à la fois une rotation et une courbure latérale. Les cinq principaux types de scoliose sont : idiopathique, congénitale, neuromusculaire, associée à un syndrome et secondaire.La scoliose idiopathique est une
- [What Does Scoliosis Look Like with LDS & Other Connective Tissue Disorders?](https://loeysdietzcanada.org/what-does-scoliosis-look-like-with-lds-other-connective-tissue-disorders/) - What Is Scoliosis?Scoliosis is a spinal deformity that involves both rotation and lateral curvature of the spine The five main types of scoliosis include idiopathic, congenital, neuromuscular, syndrome-related, and scoliosis due to secondary reasons.Idiopathic scoliosis is a type of scoliosis where the cause is unknown, or it is not related to a specific syndrome (such
- [Renforcer la communauté Loeys-Dietz grâce à des témoignages partagés, des actions de plaidoyer et des événements à venir](https://loeysdietzcanada.org/newsletter-empowering-the-loeys-dietz-community-through-shared-stories-advocacy-and-upcoming-events/) - À Loeys-Dietz Canada, nous nous engageons à à créer une communauté solidaire et interconnectée aux personnes, aux familles, aux cliniciens et aux chercheurs impactés par le syndrome de Loeys-Dietz (SLD) et d’autres troubles héréditaires de l’aorte thoracique (HTAD) connexes.Dans cette édition de notre bulletin, nous vous présentons :Les événements à venirUn nouvel article de blogue
- [Newsletter: Empowering the Loeys-Dietz Community Through Shared Stories, Advocacy and Upcoming Events](https://loeysdietzcanada.org/newsletter-empowering-the-loeys-dietz-community-through-shared-stories-advocacy-and-upcoming-events/) - At Loeys-Dietz Canada, we are dedicated to fostering a supportive environment for individuals, families, clinicians, and researchers impacted by Loeys-Dietz syndrome (LDS) and other related Hereditary Thoracic Aortic Disorders (HTAD). In this edition of our newsletter, we bring you:Upcoming eventsA powerful new blog post sharing patient storiesA patient written e-book seriesAn invitation to participate in the Canadian Survey on
- [Témoignages de patients : force et resilience](https://loeysdietzcanada.org/patient-stories-of-strength-resilience/) - Dans cet article, nous partageons trois parcours marquants, chacun façonné par la détermination, l'amour et le combat pour un avenir meilleur.
- [Patient Stories of Strength & Resilience](https://loeysdietzcanada.org/patient-stories-of-strength-resilience/) - In this post, we share three powerful journeys—each shaped by determination, love, and the fight for a better tomorrow.
- [2022 Recipients of the First LEAP Impact Award](https://loeysdietzcanada.org/2022-recipients-of-the-first-leap-impact-award/) - FOR IMMEDIATE RELEASE The Loeys-Dietz Syndrome Foundation Canada is proud to announce the 2022 recipients of our first LEAP Impact Award. Congratulations to Nairy Khodabakhshian, Dr. Pei-Yu Chen, Dr. Michelle Keir, and Dr. Gauri Karur! Loeys-Dietz syndrome (LDS) is a rare genetic vascular disease that was recently identified in 2005, and consists of malformations in
- [An Unhealthy Fixation on Cardiovascular Causation](https://loeysdietzcanada.org/fixation-on-cardiovascular-causation/) - I was inspired to create this poem due to the level of negative thoughts that occur daily in my mind.
- [Une fixation malsaine sur le lien de causalité cardiovasculaire](https://loeysdietzcanada.org/fixation-on-cardiovascular-causation/) - Écrit par : Amiel Buning*Poum poum* *Poum poum* *Poum poum*Écoute plus attentivement et dis-moi ce que tu entendsMain sur la poitrine, dis-moi ce que tu ressensSi je te donnais un indice, serait-il clair comme de l’eau de roche ?Le bruit des battements de ton cœur signifie que tu es en vieEt s’il devenait une fixation
- [Sacs, étiquettes et (mauvaise) identification des drapeaux verts](https://loeysdietzcanada.org/bags-tags-and-misidentifying-the-green-flags/) - Bien que le titre et l'introduction de ce billet de blog vous fassent déjà bizarre, je suppose qu'il s'agit des difficultés de vivre avec des SLD.
- [Kids with LDS: Get the Facts for your Family](https://loeysdietzcanada.org/kids-with-lds-get-the-facts-for-your-family/) - Loeys-Dietz syndrome (LDS) affects people of all ages, including children. Their diagnosis can be a big adjustment for the whole family. However, understanding your child’s diagnosis, care, and resources can help them to live a long and meaningful life.
- [An Essential Guide to the Research Around You](https://loeysdietzcanada.org/an-essential-guide-to-the-research-around-you/) - In order to deliver quality health care to you and your family, medical professionals rely on research. Here, we explore how researchers make new discoveries, current tools for LDS research, and LDSF Canada’s upcoming research award, the LEAP Impact Award.
- [Travelling with Loeys-Dietz Syndrome: Prepare to Reach New Destinations](https://loeysdietzcanada.org/travelling-with-loeys-dietz-syndrome-prepare-to-reach-new-destinations/) - Travelling is an opportunity that everyone deserves to experience. However, it can easily become complicated due to the medical needs of chronic illness.
- [Katya, An Advocate for Travelling with Chronic Illness](https://loeysdietzcanada.org/katya-an-advocate-for-travelling-with-chronic-illness/) - Katya is an advocate and influencer using social media to share her experiences, insights, and resources for travel and daily life with chronic illness.
- [Izzy Shares her Life with Chronic Illness](https://loeysdietzcanada.org/izzy-shares-her-life-with-chronic-illness/) - Izzy is a genetic counselling student with a special interest in genetic connective tissue disorders. She has Hypermobile Ehlers-Danlos syndrome (hEDS).
- [School and Loeys-Dietz Syndrome: Guidance for Families, Educators, and Students](https://loeysdietzcanada.org/school-and-loeys-dietz-syndrome-guidance-for-families-educators-and-students/) - How can students and families with Loeys-Dietz syndrome (LDS) prepare for school? What should educators know about students with LDS?
- [How to Transition from Pediatric to Adult Care with Loeys-Dietz Syndrome](https://loeysdietzcanada.org/how-to-transition-from-pediatric-to-adult-care-with-loeys-dietz-syndrome/) - Keep reading to learn about transition, as well as the goals, challenges, expert suggestions, and resources for Loeys-Dietz syndrome.
- [Loeys-Dietz Syndrome and Inflammatory Bowel Disease](https://loeysdietzcanada.org/loeys-dietz-syndrome-and-inflammatory-bowel-disease/) - What is Loeys-Dietz Syndrome? Loeys-Dietz syndrome (LDS) is a rare genetic disorder that affects the connective tissue in the body. The disorder was first described in 2005 by Dr. Bart Loeys and Dr. Hal Dietz at the Johns Hopkins University School of Medicine. LDS is caused by a mutation (change) in either the TGFBR1 or
- [Did You Know?](https://loeysdietzcanada.org/did-you-know/) - Did you know that Loeys-Dietz syndrome (LDS) patients can have vision and eye problems? Hypertelorism (widely spaced eyes) is a typical characteristic of LDS, while myopia (difficulty seeing from afar) and strabismus (misaligned eyes) are common issues -- What is a Magnetic Resonance Angiogram (MRA)? It is an imaging tool that uses a magnet and
- [Genetics and Loeys-Dietz Syndrome](https://loeysdietzcanada.org/genetics-and-loeys-dietz-syndrome/) - Loeys-Dietz syndrome (LDS) is a genetic condition that affects the body’s connective tissue. As a genetic condition, it can be traced back to your genes and may be passed on to your children.What are genes? How can they impact you and your family? Keep reading to find out.Genetics 101Our cells use genetic information known as
- [Pain Resources and Clinics for Loeys-Dietz Syndrome](https://loeysdietzcanada.org/pain-resources-and-clinics-for-loeys-dietz-syndrome/) - People with Loeys-Dietz syndrome may experience pain throughout the body. Pain can be chronic (lasting more than three or four months) and negatively impact quality of life.To help decrease pain, we recommend:Reading about Loeys-Dietz syndrome and pain management strategies, chronic pain, and the impact of cold weather – read about pain here.Consulting this page’s information on
- [Amiel's Story](https://loeysdietzcanada.org/amiels-story/) - After officially being diagnosed with Loeys-Dietz syndrome (SMAD-3 variation) in October 2021 and having to postpone my pursuit in higher education, I knew my life would be filled with various new challenges. During my diagnosis, I remember this overwhelming sense of anxiety, stress, and fear, and how I wish I had someone to talk to
- [Dr. Cavalle-Garrido: A Champion for LDS Care and Research](https://loeysdietzcanada.org/dr-cavalle-garrido/) - Dr. Tiscar Cavalle-Garrido has long been a leader and champion for Loeys-Dietz syndrome (LDS) diagnosis, multidisciplinary care, and research. She occupies six academic and clinical appointments, including an appointment as Associate Professor at McGill University, and is a pediatric cardiologist at the Montreal Children’s Hospital. Dr. Cavalle-Garrido has an active interest in caring for children
- [Caregivers and Loeys-Dietz Syndrome: Navigate your Journey and Find Support](https://loeysdietzcanada.org/caregivers-and-loeys-dietz-syndrome/) - Caregivers play an invaluable role in the lives of people with Loeys-Dietz syndrome (LDS). However, caregiving can be challenging. It is important to talk about navigating this journey and finding support. In this article, we cover: Who are caregivers? Caring for people with LDS Caregiving experiences Tips and tricks Where to find support Financial assistance
- [LDS and Allergic Disease](https://loeysdietzcanada.org/lds-and-allergic-disease/) - People with Loeys-Dietz syndrome (LDS) are more likely than others to have allergic diseases like allergies, eczema, asthma, and eosinophilic gastrointestinal disease.How do you know if you have an allergic disease? What to do if you have one? Keep reading to find out. Allergic disease and LDSPeople with Loeys-Dietz syndrome are more likely than the
- [Le SLD et les maladies allergiques](https://loeysdietzcanada.org/lds-and-allergic-disease/) - Les personnes atteintes du syndrome de Loeys-Dietz (SLD) sont plus susceptibles que les autres de souffrir de maladies allergiques comme les allergies, l’eczéma, l’asthme et les maladies gastro-intestinales à éosinophiles.Comment savoir si vous souffrez d’une maladie allergique ? Que faire si vous souffrez d’une maladie allergique ? Continuez de lire pour en apprendre davantage. Maladies allergiques et
- [Living with Idiopathic Scoliosis](https://loeysdietzcanada.org/living-with-idiopathic-scoliosis/) - Tangled in the Curves author, Caroline Bell, shares the events leading up to her surgery, life beyond it, and the visible and invisible scars of scoliosis.
- [Higgy Bears : Pour les enfants et les adolescents atteints de scoliose](https://loeysdietzcanada.org/higgy-bears-for-kids-teens-with-scoliosis/) - Les Higgy Bears sont des ours en peluche spéciaux pour les enfants et les adolescents atteints de scoliose. Ils sont un petit ami là où il n'y en avait pas pour aider l'enfant dans son traitement de la scoliose.
- [Higgy Bears: For Kids & Teens with Scoliosis](https://loeysdietzcanada.org/higgy-bears-for-kids-teens-with-scoliosis/) - Higgy Bears are special teddy bears for kids and teens with scoliosis. They are a little friend where one didn’t exist to help the child through their scoliosis treatment.
- [What does Loeys-Dietz Syndrome Look Like?](https://loeysdietzcanada.org/what-does-loeys-dietz-syndrome-look-like-an-overview-into-the-phenotypic-differences-across-lds-subtypes/) - An Overview into the Phenotypic Differences Across LDS Subtypes 8 min. read Do the different types of Loeys-Dietz syndrome (LDS) have different features? Research has now shown that there are both similarities and differences between the types of LDS. Keep reading to find the phenotypes (features) associated with LDS, the types of LDS, and other
- [Peer Support Groups](https://loeysdietzcanada.org/peer-support-groups/) - Living with a rare disease can present significant challenges. In such circumstances, peer support groups offer a lifeline
- [Canadian Paediatric Spine Society Symposium](https://loeysdietzcanada.org/canadian-paediatric-spine-society-symposium/) - The Loeys-Dietz Syndrome Foundation Canada and the Canadian Paediatric Spine Society hosted a Connective Tissue Disorder & Spinal Manifestations Symposium.
- [Trauma Response to A Life-Changing Diagnosis](https://loeysdietzcanada.org/life-changing-diagnosis/) - “You Have it”. After months of waiting for an official diagnosis, my results were given to me through these three life-changing words.
- [Navigating Family Planning with Loeys-Dietz Syndrome: A Comprehensive Guide](https://loeysdietzcanada.org/family-planning-with-lds/) - Bringing a child into the world is a profound and joyous journey, filled with anticipation and excitement. However, for individuals and families affected by Loeys-Dietz syndrome (LDS), this journey may come with unique considerations and challenges.Understanding the NeedFamily planning is a deeply personal and nuanced process. For those with LDS, the considerations extend beyond the
- [Unveiling the Mindful Solution: Managing Chronic Pain in Loeys-Dietz Syndrome](https://loeysdietzcanada.org/mindfulness-and-chronic-pain-in-lds/) - The Loeys-Dietz Syndrome Foundation Canada is spearheading efforts to provide a mindfulness meditation program tailored for individuals with LDS.
- [Loeys-Dietz Syndrome: Cardiovascular Complications & Preparing for Surgery](https://loeysdietzcanada.org/loeys-dietz-syndrome-cardiovascular-complications-preparing-for-surgery/) - This blog is meant to help individuals with Loeys-Dietz syndrome better understand when surgery might be necessary and the types of procedures that may be performed.
- [Emergency Preparedness Booklet for Loeys-Dietz Syndrome Families](https://loeysdietzcanada.org/emergency-preparedness-booklet-for-loeys-dietz-syndrome-families/) - Understanding the unique challenges associated with this disorder, we are thrilled to announce the release of a new Emergency Preparedness Booklet.
- [Les cliniciens établiront des liens lors de cette prochaine conférence](https://loeysdietzcanada.org/pediatric-gastroenterology-cardiology-for-the-clinician/) - Gastro-entérologie et cardiologie pédiatrique pour le clinicien Les médecins, infirmières et professionnels paramédicaux en cardiologie et engastroentérologie sont invités à participer à cette opportunitéd’apprentissage interactive en petits groupes à Montréal le 30 mai 2025. Grâce à des discussions animées par des experts et à des séances de questions-réponses stimulantes, les participants seront équipés pour reconnaître
- [Clinicians will be Connecting the Dots at this Upcoming Conference](https://loeysdietzcanada.org/pediatric-gastroenterology-cardiology-for-the-clinician/) - Pediatric Gastroenterology & Cardiology for the Clinician Cardiology and Gastroenterology physicians, nurses and allied health professionals are invited to participate in this interactive, small-group learning opportunity in Montreal on May 30, 2025. With expert-led discussions and engaging Q&A sessions, attendees will leave equipped to recognize subtle signs, refine their diagnostic strategies, and improve patient outcomes.Register
- [Les enfants et le SLD : obtenez tous les faits pour votre famille](https://loeysdietzcanada.org/kids-with-lds-get-the-facts-for-your-family/) - Le syndrome de Loeys-Dietz (SLD) peut toucher les gens de tous âges, y compris les enfants. Un diagnostic peut représenter tout un ajustement pour la famille. Cependant, lorsqu’on comprend le diagnostic, les soins et que l’on connaît les ressources, cela peut aider l’enfant à vivre une longue et pleine vie.Pour souligner la Journée nationale de
- [Un guide essentiel pour la recherche autour de vous](https://loeysdietzcanada.org/an-essential-guide-to-the-research-around-you/) - Pour vous fournir, ainsi qu’à votre famille, des soins de santé de qualité, les professionnels de la santé se fondent sur la recherche. Aujourd’hui, nous examinons comment les chercheurs font des découvertes, les nouveaux outils en matière de recherche sur le SLD et le prix Impact dans le cadre du programme LEAP.Qu’est-ce que la recherche ?La
- [Katya, une défenseure des personnes qui voyagent avec une maladie chronique](https://loeysdietzcanada.org/katya-an-advocate-for-travelling-with-chronic-illness/) - Katya est une défenseure et une influenceuse qui utilise les médias sociaux pour partager ses expériences, ses idées et ses ressources pour voyager et vivre au quotidien avec une maladie chronique. Elle aborde des sujets tels que le maintien de la santé et du bien-être grâce à l’alimentation, les changements de routine, le soulagement de
- [Izzy partage sa vie avec une maladie chronique](https://loeysdietzcanada.org/izzy-shares-her-life-with-chronic-illness/) - Izzy est étudiante en conseil génétique et s'intéresse particulièrement aux troubles génétiques du tissu conjonctif. Elle a le syndrome d'Ehlers-Danlos hypermobile (SEDh).
- [Planification familiale avec le syndrome de Loeys-Dietz : Guide complet](https://loeysdietzcanada.org/family-planning-with-lds/) - Amener un enfant dans le monde est un parcours profond, rempli de bonheur, d’anticipation et d’excitation. Cependant, pour les personnes et les familles touchées par le syndrome de Loeys-Dietz (SLD), ce parcours pourrait être accompagné de considérations varieet de défis uniques.Comprendre le besoinLa planification familiale est un processus profondément personnel et nuancé. Pour ceux atteints
- [Bulletin d’information : Les proches aidants et le SLD](https://loeysdietzcanada.org/newsletter-caregivers-and-lds/) - Pour souligner la Journée nationale des proches aidants le 5 avril, nous dédions ce bulletin aux nombreux proches aidants de personnes atteintes du SLD et aux personnes qui les appuient. Dans ce bulletin, nous abordons les sujets suivants :S’orienter comme proche aidantLes ressources à l’intention des proches aidants et des personnes de leur entourageLa Dre
- [Newsletter: Caregivers and LDS](https://loeysdietzcanada.org/newsletter-caregivers-and-lds/) - In honour of National Caregiver Day on April 5, this issue is dedicated to the many LDS caregivers and the people who support them. We cover:Navigating your caregiver journeyResources for caregivers and the people around themDr. Cavalle-Garrido: LDS champion and caregiverKimberly: mother and caregiverThe Foundation’s new CORD membership
- [Bulletin d’information : Le tissu conjonctif dans l'actualité](https://loeysdietzcanada.org/newsletter-connective-tissue-in-the-news/) - Dans ce bulletin, nous parlons de personnes connues atteintes de trois types de maladies du tissu conjonctif : le syndrome de Loeys-Dietz, le syndrome de Marfan et le syndrome d’Ehlers- Danlos. Nous discutons aussi de l’importance des soins multidisciplinaires et rappelons aux chercheurs de faire une proposition pour le prix Impact dans le cadre du
- [Newsletter: Connective Tissue in the News](https://loeysdietzcanada.org/newsletter-connective-tissue-in-the-news/) - In this issue, we cover well-known people with three types of connective tissue disorders: Loeys-Dietz syndrome, Marfan syndrome, and Ehlers-Danlos syndrome. We also discuss the importance of multidisciplinary care and remind investigators to apply for the LEAP Impact Award by March 22.How can a celebrity with a connective tissue disorder impact you? When well-known people
- [Bulletin d'information : Célébration de la Journée des maladies rares 2025](https://loeysdietzcanada.org/newsletter-celebrating-rare-disease-day-2025/) - Aujourd’hui, nous sommes fiers de souligner les initiatives clés qui soutiennent les individus et les familles touchés par les aortopathies héréditaires, depuis la recherche révolutionnaire jusqu’aux efforts de plaidoyer dans de nouveaux domaines médicaux.Dans ce numéro, vous trouverez :Journée des maladies rares 2025 – Apprenez-en davantage sur cette initiative mondiale de sensibilisation.Présentation du registre CAN-ACT
- [Newsletter: Celebrating Rare Disease Day 2025](https://loeysdietzcanada.org/newsletter-celebrating-rare-disease-day-2025/) - Today, we’re proud to highlight key initiatives that support individuals and families affected by heritable aortopathies, from groundbreaking research to advocacy efforts in new medical fields.In this issue, you will find:Rare Disease Day 2025 – Learn more about this global awareness initiative.Introducing the CAN-ACT Registry – A vital step in improving care and research for
- [Newsletter: Kids and LDS](https://loeysdietzcanada.org/kids-and-lds/) - In honour of National Child Day, celebrated on November 20, this issue focuses on children. We cover the facts on kids with LDS, a caregiver’s story, the importance of multidisciplinary clinics, and the upcoming launch of our first 4 LEAP Impact Awards.
- [Bulletin d’information : Les enfants et le SLD](https://loeysdietzcanada.org/kids-and-lds/) - Pour souligner la Journée nationale de l’enfant du 20 novembre prochain, ce numéro porte sur les enfants. Nous couvrons les faits sur les enfants souffrant du SLD, l’histoire d’un proche aidant, l’importance des cliniques multidisciplinaires et le lancement prochain de nos quatre prix Impact dans le cadre du programme LEAP.
- [Bulletin d'information : La SLD : La génétique, le soutien, et plus](https://loeysdietzcanada.org/newsletter-lds-genetics-support-and-more/) - Dans ce bulletin, nous abordons :La génétique et le SLD : les mutations aléatoires et les affaires de familleCentre de soutien du SLDParticiper à un groupe de discussion : invitation aux patientsZamplo : invitation aux patients
- [Newsletter: LDS: Genetics, Support and More](https://loeysdietzcanada.org/newsletter-lds-genetics-support-and-more/) - In this issue, we discuss:Genetics and LDS: Random Mutations and Family AffairsLDS Support CentreFocus Group: Call for Patient ParticipantsZamplo: Call for Patient Participants
- [Newsletter: The LEAP Impact Award is Coming!](https://loeysdietzcanada.org/newsletter-the-leap-impact-award-is-coming/) - Mark your calendars for the upcoming launch of our first 4 LEAP Impact Awards! Applications open January 24, 2022.In anticipation of the launch, this month’s newsletter includes a guide to scientific research, information about the LEAP award, its impact in the community, and our Leadership Development Program for award recipients.
- [Bulletin d’information : Le prix Impact LEAP arrive !](https://loeysdietzcanada.org/newsletter-the-leap-impact-award-is-coming/) - Le lancement prochain de nos quatre premiers prix Impact dans le cadre du programme LEAP aura lieu bientôt ! Les demandes de subvention seront acceptées à compter du 24 janvier 2022.En attendant le lancement, le bulletin de ce mois-ci comprend un guide des recherches scientifiques, des renseignements concernant le prix Impact LEAP, l’incidence sur la
- [Bulletin d’information : La douleur chronique et le syndrome de Loeys-Dietz](https://loeysdietzcanada.org/newsletter-chronic-pain-in-loeys-dietz-syndrome/) - Les personnes atteintes du syndrome de Loeys-Dietz éprouvent souvent de la douleur chronique. Dans ce bulletin, nous abordons :les raisons possibles de la douleur chronique;ce que vous pouvez faire pour diminuer votre douleur;où trouver des cliniques antidouleur et des ressources pour le traitement de la douleur.Nous encourageons aussi les chercheurs à soumettre une proposition pour
- [Newsletter: Chronic Pain in Loeys- Dietz Syndrome](https://loeysdietzcanada.org/newsletter-chronic-pain-in-loeys-dietz-syndrome/) - Chronic pain is a common problem for people with Loeys-Dietz syndrome. In this issue, we discuss:why you may be having chronic pain;what you can do to decrease your pain;where you can find pain clinics and resources.We also encourage researchers to submit a proposal for the LEAP Impact Award by March 22, 2022.
- [Highlights from HAD 2019](https://loeysdietzcanada.org/highlights-from-had-2019/) - The 2nd annual Heritable Aortic Disorders symposium was a resounding success with more than 180 health professionals and 40 patients and family members in attendance! This year, the HAD collaborative hosted the event at CHU Ste. Justine in Montreal, Quebec with the goal of educating and connecting healthcare professionals, foundation members, patients, and families over 2 days of presentations, workshops
- [Faits saillants du SAH de 2019](https://loeysdietzcanada.org/highlights-from-had-2019/) - Le 2e Symposium annuel sur les aortopathies héréditaires a connu un franc succès, comme en témoigne la présence de plus de 180 professionnels de la santé et de pas moins de 40 patients et membres de leurs familles! Cette année, le symposium avait lieu au CHU Sainte-Justine, à Montréal, au Québec. L’objectif des deux journées de présentations et d’ateliers
- [Groupes de soutien par les pairs](https://loeysdietzcanada.org/peer-support-groups/) - Vivre avec une maladie rare peut présenter des défis . Dans de telles circonstances, les groupes de soutien par les pairs constituent une bouée de sauvetage.
- [FSLDC à la conférence ICOI 2025](https://loeysdietzcanada.org/ldsfc-at-the-2025-icoi-conference/) - Cet événement a réuni un groupe de professionnels dentaires, offrant une plateforme pour sensibiliser aux troubles héréditaires de l'aorte et à leur impact.
- [Choisissez votre propre aventure ! L'arc d'entraînement physique du syndrome Loeys-Dietz](https://loeysdietzcanada.org/choose-your-own-adventure-the-loeys-dietz-syndrome-training-arc/) - Après avoir reçu votre diagnostic de Loeys-Dietz, l’étape suivante consiste à décider comment vous voulez vivre votre vie.
- [Choose Your Own Adventure! The Loeys-Dietz Syndrome Training Arc](https://loeysdietzcanada.org/choose-your-own-adventure-the-loeys-dietz-syndrome-training-arc/) - After receiving your Loeys-Dietz diagnosis and coming to terms with your chronic health condition, the next step is to decide how you want to live your life.
- [Le syndrome de Loeys-Dietz et l’école : des conseils pour les familles, les éducateurs et les élèves](https://loeysdietzcanada.org/school-and-loeys-dietz-syndrome-guidance-for-families-educators-and-students/) - Comment les familles et les élèves touchés par le syndrome de Loeys-Dietz (SLD) peuvent-ils se préparer pour l’école ?
- [Livret de préparation aux situations d'urgence pour les familles atteintes du syndrome de Loeys-Dietz](https://loeysdietzcanada.org/emergency-preparedness-booklet-for-loeys-dietz-syndrome-families/) - Nous sommes ravis d'annoncer la publication d’un nouveau livret détaillant la préparation aux situations d'urgence.
- [Syndrome de Loeys-Dietz : Complications cardiovasculaires et préparation à la chirurgie](https://loeysdietzcanada.org/loeys-dietz-syndrome-cardiovascular-complications-preparing-for-surgery/) - Ce blog a pour objectif de servir de guide complet pour aider les personnes atteintes de syndrome de Loeys-Dietz à mieux comprendre quand la chirurgie peut être nécessaire et à connaître les types de procédures qui pourraient être réalisées.
- [Bags, Tags, and (Mis)Identifying the Green Flags](https://loeysdietzcanada.org/bags-tags-and-misidentifying-the-green-flags/) - While you may already be weirded out by the title and introduction of this blog post, I assume you know it relates to the difficulties of living with LDS.
- [Comment passer des soins pédiatriques aux soins pour adultes dans le cas du syndrome de Loeys-Dietz ?](https://loeysdietzcanada.org/how-to-transition-from-pediatric-to-adult-care-with-loeys-dietz-syndrome/) - Continuez à lire pour en apprendre davantage sur la transition ainsi que sur les objectifs, les défis, les suggestions des experts et les ressources pour le SLD
- [Voyager avec le syndrome de Loeys-Dietz : se préparer à atteindre de nouvelles destinations](https://loeysdietzcanada.org/travelling-with-loeys-dietz-syndrome-prepare-to-reach-new-destinations/) - es voyages peuvent devenir compliqués en raison des médicaments quotidiens ou des besoins médicaux liés à une maladie chronique.
- [Révéler la solution de la pleine conscience : Gestion de la douleur chronique dans le syndrome de Loeys-Dietz](https://loeysdietzcanada.org/mindfulness-and-chronic-pain-in-lds/) - FSLDC est le fer de lance des efforts visant à proposer un programme de méditation de pleine conscience adapté aux personnes atteintes du SLD.
- [Exploring Frontiers in Genetic Medicine](https://loeysdietzcanada.org/exploring-frontiers-in-genetic-medicine/) - CHEO is offering an exceptional Clinical and Research Fellowship in Aortopathy and Heritable Connective Tissue Disorders.
- [Explorer les frontières de la médecine génétique](https://loeysdietzcanada.org/exploring-frontiers-in-genetic-medicine/) - Le CHEO offre une bourse de recherche clinique et de recherche exceptionnelle sur l'aortopathie et les troubles héréditaires du tissu conjonctif.
- [Réaction à un diagnostic qui change la vie](https://loeysdietzcanada.org/life-changing-diagnosis/) - « Vous l'avez. » Après des mois d'attente d'un diagnostic officiel, mes résultats m'ont été communiqués par ces trois mots qui ont changé ma vie.
- [Renforcer les liens](https://loeysdietzcanada.org/empowering-connections/) - Réflexions sur le symposium sur les aortopathies héréditaires 2023. Dans ce blog, nous allons nous pencher sur deux perspectives distinctes fournies par Amiel, un patient atteint du syndrome de Loeys-Dietz, et Sally, une étudiante qui aspire à devenir une conseillère en génétique.
- [Empowering Connections](https://loeysdietzcanada.org/empowering-connections/) - Reflections from the Heritable Aortic Disorders Symposium 2023 from a Loeys-Dietz syndrome patient and an aspiring genetic counseling student.
- [Symposium de la Société canadienne de la colonne vertébrale pédiatrique](https://loeysdietzcanada.org/canadian-paediatric-spine-society-symposium/) - Le symposium sur les troubles du tissu conjonctif et les manifestations vertébrales a rassemblé des professionnels de la santé, des patient.e.s et des défenseurs des interêts afin d'approfondir la relation complexe entre les troubles du tissu conjonctif et les manifestations vertébrales.
- [À quoi ressemble le syndrome de Loeys-Dietz?](https://loeysdietzcanada.org/what-does-loeys-dietz-syndrome-look-like-an-overview-into-the-phenotypic-differences-across-lds-subtypes/) - Un aperçu des différences phénotypiques entre les sous-types du SLD Lecture de 8 minutes Les différents types du syndrome de Loeys-Dietz (SLD) présentent-ils des caractéristiques différentes? La recherche a maintenant démontré qu'il existe à la fois des similitudes et des différences entre les divers types de SLD. Poursuivez votre lecture pour découvrir les phénotypes (caractéristiques)
- [Vivre avec la scoliose idiopathique](https://loeysdietzcanada.org/living-with-idiopathic-scoliosis/) - L'auteure de Tangled in the Curves, Caroline Bell, partage les événements qui ont conduit à son opération, la vie après celle-ci et les cicatrices visibles et invisibles de la scoliose.
- [Les lauréats du premier prix Impact LEAP 2022](https://loeysdietzcanada.org/2022-recipients-of-the-first-leap-impact-award/) - POUR PUBLICATION IMMÉDIATE La Fondation du syndrome Loeys-Dietz Canada est fière d'annoncer les lauréats 2022 de son premier prix Impact LEAP. Félicitations à Nairy Khodabakhshian, Dr Pei-Yu Chen, Dr Michelle Keir et Dr Gauri Karur! Le syndrome de Loeys-Dietz (SLD) est une maladie génétique vasculaire rare identifiée en 2005, et consiste en une dégénérescence du tissu
- [#MardiJeDonne](https://loeysdietzcanada.org/giving-tuesday/) - En ce Mardi je donne, rejoignez-nous pour construire un avenir meilleur ! À l’occasion de la journée Mardi je donne, le 29 novembre, les communautés se réunissent pour faire du bien. Impliquez-vous dans la communauté du syndrome de Loeys-Dietz (SLD) en faisant un don, devenant bénévole, ou s’abonnant à nos infolettres. Ou bien, impliquez-vous sur les médias
- [#GivingTuesday](https://loeysdietzcanada.org/giving-tuesday/) - This Giving Tuesday, join us in building a better tomorrow! On Giving Tuesday, November 29th, communities come together to do good. Get involved in the Loeys-Dietz syndrome (LDS) community by donating, volunteering, or subscribing to our newsletter! Or, get involved on social media by following our Facebook, Instagram, Twitter, Youtube, and LinkedIn. Donate today We need your help
- [La génétique et le syndrome de Loeys-Dietz](https://loeysdietzcanada.org/genetics-and-loeys-dietz-syndrome/) - Le syndrome de Loeys-Dietz (SLD) est une maladie génétique qui affecte le tissu conjonctif du corps. En tant que maladie génétique, elle peut être retracée dans vos gènes et peut être transmise à vos enfants. Que sont les gènes ? Quel impact la génétique et le syndrome de Loeys-Dietz peuvent-ils avoir sur vous et votre famille
- [Les proches aidants et le syndrome de Loeys-Dietz : S'orienter et trouver du soutien](https://loeysdietzcanada.org/caregivers-and-loeys-dietz-syndrome/) - Les proches aidants jouent un rôle inestimable dans la vie des personnes atteintes du syndrome de Loeys-Dietz (SLD). Cependant, la prestation de soins peut être difficile. Il est important de parler de la manière dont on peut s’orienter et trouver du soutien. Dans cet article, nous abordons les sujets suivants : La définition d’un proche
- [Kimberly and Logan's Story: Parent of a Child with Loeys-Dietz Syndrome](https://loeysdietzcanada.org/kimberly-and-logans-story/) - As a parent of a child with Loeys-Dietz syndrome type 2 you never know what the next day is going to bring. From the time I was five months pregnant I was told that Logan would not survive once he was born because they could not tell me what was wrong with him. Watching him grow
- [L'histoire de Kimberly et Logan : Parent d'un enfant atteint du syndrome de Loeys-Dietz](https://loeysdietzcanada.org/kimberly-and-logans-story/) - En tant que parent d’un enfant atteint du syndrome de Loeys-Dietz de type 2, vous ne savez jamais ce qui vous attend. Lorsque j’étais enceinte de cinq mois, on m’a dit que Logan ne survivrait pas à la naissance, mais personne ne pouvait me dire ce qui n’allait pas. Le voir grandir et savoir qu’il est
- [La Dre Cavalle-Garrido : Une championne des soins et de la recherche sur le SLD](https://loeysdietzcanada.org/dr-cavalle-garrido/) - La Dre Tiscar Cavalle-Garrido est depuis longtemps une leader et une championne sur le diagnostic du syndrome de Loeys-Dietz, des soins multidisciplinaires et de la recherche. Elle occupe six postes académiques et cliniques, incluant le poste de professeure associée à l'Université McGill, et est également cardiologue pédiatrique à l'Hôpital de Montréal. La Dre Cavalle-Garrido s'intéresse
- [LDSF Canada 2023 Rare Disease Day Statement](https://loeysdietzcanada.org/ldsf-canada-2023-rare-disease-day-statement/) - Transforming the Future of LDS “When you hear hoofbeats, don’t expect to see a zebra”. This adage was used to teach primary care professionals about looking for common conditions. But it is not so suitable when considering diagnosing and supporting patients with rare diseases like Loeys-Dietz syndrome.On Rare Disease Day 2023, our Foundation is standing
- [Communiqué de la FSLD Canada pour la Journée des maladies rares 2023](https://loeysdietzcanada.org/ldsf-canada-2023-rare-disease-day-statement/) - Transformer l’avenir du SLD « Quand vous entendez des bruits de sabots, ne vous attendez pas à voir un zèbre ». Cet adage a été utilisé pour enseigner aux professionnels de première ligne à rechercher des affections courantes. Cependant, il n’est pas aussi adapté lorsqu’il s’agit de diagnostiquer et de soutenir des patients atteints de maladies
- [L'histoire d'Amiel](https://loeysdietzcanada.org/amiels-story/) - Après avoir été officiellement diagnostiquée avec le syndrome de Loeys-Dietz (variation SMAD-3) en octobre 2021 et avoir dû reporter mes études supérieures, je savais que ma vie serait remplie de nouveaux défis. Pendant mon diagnostic, je me souviens de ce sentiment écrasant d'anxiété, de stress et de peur, et du fait que j'aurais aimé avoir
- [Avis de décès de Mr. Justin Fratino](https://loeysdietzcanada.org/in-memory-of-justin-fratino/) - L'éloge funèbre de Justin, prononcé par son père Salvatore (Sal) Fratino : Justin est né le 27 mars 1982 à 9h 32. Quatre heures plus tard, il a subi sa toute première chirurgie, une des nombreuses interventions médicales dont il va endurer tout au long de sa vie. Justin est né avec un trouble rare que
- [In Memory of Justin Fratino](https://loeysdietzcanada.org/in-memory-of-justin-fratino/) - Justin’s eulogy, delivered by his father Salvatore (Sal) Fratino: Justin was born on March 27, 1982 at 9:32 AM and 4 hours later, he had the 1st of many more medical interventions. Justin was born with a rare disorder that we found out many years later was known as the Loeys-Dietz syndrome (LDS) discovered by
- [Ressources et cliniques antidouleur pour le syndrome de Loeys-Dietz](https://loeysdietzcanada.org/pain-resources-and-clinics-for-loeys-dietz-syndrome/) - Les personnes atteintes du syndrome de Loeys-Dietz peuvent ressentir des douleurs partout dans leur corps. La douleur peut être chronique (durer plus de trois ou quatre mois) et avoir un impact négatif sur la qualité de vie.Pour vous aider à diminuer la douleur, nous vous recommandons :de lire des informations sur le syndrome de Loeys-Dietz
- [Hélène's Story](https://loeysdietzcanada.org/helenes-story/) - My name is Hélène, I am 45 years old, and my husband and I have 3 children. After over 20 years of doctors telling me not to worry about having Marfan syndrome, my son and I were diagnosed with Loeys-Dietz syndrome (LDS) type 2. Here is my story - of misdiagnosis, my hunch that something
- [Kristýna’s Story: “The story of an invisible”](https://loeysdietzcanada.org/kristynas-story-the-story-of-an-invisible/) - My name is Kristýna, I am 28 years old and am a graduate clerk. I currently work in a supermarket and have been living in Prague for 10 years, but come from Cheb in the Czech Republic. I have a great husband, a wonderful son, a cat, fish, 64 house plants and Loeys-Dietz syndrome. I
- [L'histoire de Kristýna : « L'histoire d'une invisible »](https://loeysdietzcanada.org/kristynas-story-the-story-of-an-invisible/) - Je m'appelle Kristýna, j'ai 28 ans, et je suis une employée diplômée. Je travaille actuellement dans un supermarché et je vis à Prague depuis 10 ans mais je viens de Cheb en République tchèque. J'ai un mari formidable, un fils merveilleux, un chat, des poissons, 64 plantes d'intérieur et le syndrome de Loeys-Dietz. Je suis
- [L'histoire d'Hélène](https://loeysdietzcanada.org/helenes-story/) - Je m'appelle Hélène, j'ai 45 ans et je suis mariée avec 3 enfants. Après plus de 20 ans pendant lesquels les médecins m’ont dit que je ne devais pas m'inquiéter d'avoir le syndrome de Marfan, mon fils et moi avons été diagnostiqués comme atteints du syndrome de Loeys-Dietz de type 2. Voici mon récit –
- [Le saviez-vous ?](https://loeysdietzcanada.org/did-you-know/) - Saviez-vous que les patients atteints du syndrome de Loeys-Dietz (SLD) peuvent avoir des problèmes de vision et des problèmes aux yeux ? L'hypertélorisme (yeux très espacés) est une caractéristique typique du SLD, tandis que la myopie (difficulté à voir de loin) et le strabisme (désalignement des yeux) sont aussi des problèmes courants. -- Qu'est-ce qu'une
- [Syndrome de Loeys-Dietz et les maladies inflammatoires de l’intestin](https://loeysdietzcanada.org/loeys-dietz-syndrome-and-inflammatory-bowel-disease/) - Qu'est-ce que le syndrome de Loeys-Dietz? Le syndrome de Loeys-Dietz (SLD) est une maladie génétique rare qui affecte le tissu conjonctif du corps. Ce syndrome a été décrit pour la première fois en 2005 par le Dr Bart Loeys et le Dr Hal Dietz à la faculté de médecine de l’Université Johns Hopkins. Le SLD

## Pages

- [Home - Loeys-Dietz Syndrome Foundation Canada](https://loeysdietzcanada.org/) - Connecting the Dots We believe in connecting people, symptoms, resources, and solutions. Donate KNOW THE SIGNS of LDS Our Mission The Loeys-Dietz Syndrome Foundation Canada is a national charitable organization dedicated to the promotion of research, awareness, education and support for those affected by Loeys-Dietz syndrome (LDS). ABOUT THE FOuNDATION Stay up to date Subscribe
- [Trouver de l'aide](https://loeysdietzcanada.org/patient-support/find-help/) - Trouver de l'aide Abonnez-vous à notre bulletin Nous sommes là pour vous, pour que vous ne soyez pas seul face à vos soucis. La Fondation soutient les patients, les familles et les défenseurs de la communauté du syndrome de Loeys-Dietz par le biais de : La ligne d’assistance téléphonique pour le syndrome de Loeys-Dietz au
- [Find Help](https://loeysdietzcanada.org/patient-support/find-help/) - Find Help Subscribe to our newsletter We are here for you, so that you do not face your worries alone. The Foundation supports patients, families, and advocates in the Loeys-Dietz syndrome community through its: Loeys-Dietz syndrome helpline at 1-888-LDS-FCAN. Find peer support, answers, and resources through the helpline. Resource Directory of hundreds of LDS resources. Find information
- [Contact Us](https://loeysdietzcanada.org/contact-us/) - Contact Us We are here for you. Name Phone Email Message Send Email 1 (888) LDS-FCAN 1 (888) 537-3226 The Loeys-Dietz Syndrome Foundation Canada835 Avenue SelkirkPointe-Claire, Quebec,Canada H9R 3S2 Crisis Support Notice If you are experiencing an emergency, please call 911 immediately.If you or someone you know is in emotional distress or suicidal crisis, call or
- [Contactez-nous](https://loeysdietzcanada.org/contact-us/) - Contactez-nous Nous sommes là pour vous. Nom Téléphone Courriel Message Envoyer un courriel 1 (888) LDS-FCAN 1 (888) 537-3226 La Fondation du syndrome Loeys-Dietz Canada835 avenue SelkirkPointe-Claire (Québec)Canada H9R 3S2 Avis de soutien en situation de crise Si vous vivez une urgence, veuillez appeler immédiatement le 911.Si vous ou une personne que vous connaissez traversez une détresse
- [Sondage de Satisfaction](https://loeysdietzcanada.org/sondage-de-satisfaction/)
- [Notre équipe](https://loeysdietzcanada.org/our-foundation/our-team/) - Notre équipe Notre équipe se consacre à créer un impact positif dans la communauté du syndrome de Loeys-Dietz (SLD). Notre équipe est composée du personnel du FSLDC, du conseil d’administration, du conseil consultatif médical et scientifique et du comité de partenariat avec les patients. Le personnel du FSLDC Headshot_Jida-El-Hajjar_Final.jpg Lindsay_Final.jpg Jida El Hajjar, Ph.D., Directrice
- [Our Team](https://loeysdietzcanada.org/our-foundation/our-team/) - Our Team Our team is dedicated to creating a positive impact in the Loeys-Dietz syndrome (LDS) community. Our team consists of the LDSFC staff, Board of Directors, Medical and Scientific Advisory Council, and Patient Partnership Committee. LDSFC Staff Jida El Hajjar, Ph.D. Lindsay Parsons Jida El Hajjar, Ph.D., Executive DirectorJida El Hajjar is a scientist
- [Où trouver une Clinique](https://loeysdietzcanada.org/patient-support/where-to-find-a-clinic/) - Où trouver une clinique Trouver une clinique pour le syndrome de Loeys-Dietz Notre répertoire Trouver une clinique énumère des centres de santé canadiens dont le personnel est spécialisé dans le syndrome de Loeys-Dietz et les troubles connexes, ainsi qu’en génétique et/ou en cardiologie. Il peut être nécessaire d’obtenir une recommandation afin d’être traité dans ces
- [Where to Find a Clinic](https://loeysdietzcanada.org/patient-support/where-to-find-a-clinic/) - Where to Find a Clinic Find a Clinic for Loeys-Dietz Syndrome The Foundation’s Find a Clinic directory lists Canadian health centres where staff have expertise in Loeys-Dietz syndrome, related conditions, and genetics and/or cardiology. It may be necessary to obtain a referral to be treated at these centres. If you cannot find a clinic near you or would
- [Le syndrome de Loeys-Dietz & les chercheurs](https://loeysdietzcanada.org/researchers/) - Le syndrome de Loeys-Dietz & les chercheurs La Fondation du Syndrome de Loeys-Dietz Canada soutient et finance des initiatives de recherche innovatrices du syndrome de Loeys-Dietz (SLD) et d’autres maladies connexes. La Fondation soutient les chercheurs par le biais de programmes de subventions de la recherche au Canada et à l’international. De surcroît, la Fondation développe
- [Researchers](https://loeysdietzcanada.org/researchers/) - Loeys-Dietz Syndrome & Researchers The Loeys-Dietz Syndrome Foundation Canada supports and funds innovative research initiatives related to Loeys-Dietz syndrome (LDS) and similar conditions. The Foundation supports researchers through a research database, a new Canadian registry, and research funding in Canada and internationally. CANadian Aortopathy and Connective Tissue (CAN-ACT) Registry We are proud to be founding members of
- [Rapports annuels](https://loeysdietzcanada.org/our-foundation/statements/) - Rapports annuels Rapport annuel : 2022 2023 2024 Cet avis sert à accompagner nos états financiers et à vous fournir un bref aperçu de notre modèle de financement.À la Fondation du syndrome Loeys-Dietz Canada (FSLDC), nous sommes les pionniers d’une approche audacieuse et avant-gardiste du financement caritatif. Contrairement aux organismes de bienfaisance traditionnels, notre modèle
- [Annual Reports](https://loeysdietzcanada.org/our-foundation/statements/) - Annual Reports Annual Reports: 2022 2023 2024 This statement serves to accompany our financial statements and provide you with a brief outline of our funding model.At Loeys-Dietz Syndrome Foundation Canada (LDSFC), we are pioneering a bold and forward-thinking approach to charitable financing. Unlike traditional charities, our model is based on long-term sustainability rather than short-term cash
- [Notre impact](https://loeysdietzcanada.org/our-foundation/our-impact/) - Notre impact La FSLDC est un catalyseur de changement. Nous sommes fiers d’avoir un impact positif dans les communautés qui travaillent et vivent avec le syndrome de Loeys-Dietz (SLD). L’impact de la Fondation se fait ressentir dans les domaines de la recherche, de la sensibilisation et de l’éducation, et du soutien aux patients et aux
- [Our Impact](https://loeysdietzcanada.org/our-foundation/our-impact/) - Our Impact LDSFC is a catalyst for change. We are proud to be creating a positive impact in the communities working and living with Loeys-Dietz syndrome (LDS). The Foundation’s impact spans across areas of research, awareness and education, and support for patients and families. download our impact factsheet Our Research Through research, we uncover new
- [Home](https://loeysdietzcanada.org/) - Établir les liens Nous croyons qu'il faut relier les personnes touchées et leurs symptômes avec les ressources nécessaires, la communauté, et les solutions ! Faire un don Connaître les signes du SLD Notre mission La Fondation du syndrome Loeys-Dietz Canada est un organisme de bienfaisance national qui se consacre à la promotion de la recherche,
- [Blogue](https://loeysdietzcanada.org/blog/) - Blogue Parcourir par catégorie Chroniques SLD d'Amiel Éducation Événements Bulletins d'information Témoignages de patients et soutien Recherche Voir tous les articles Articles les plus récents Aortic Dissection Awareness Week (September 14 – 20, 2025) En savoir plus » 9 September 2025 From Rare to Recognized – LDSFC at the 29th Canadian Connective Tissue Conference (CCTC)
- [Blogue: Tous les articles](https://loeysdietzcanada.org/blog/all-blog-articles/) - Blogue: Tous les articles Aortic Dissection Awareness Week (September 14 – 20, 2025) En savoir plus » 9 September 2025 From Rare to Recognized – LDSFC at the 29th Canadian Connective Tissue Conference (CCTC) En savoir plus » 2 July 2025 What Does Scoliosis Look Like with LDS & Other Connective Tissue Disorders? En savoir
- [Blog](https://loeysdietzcanada.org/blog/) - Blog Browse by Category Amiel's LDS Choronicles Education Events Newsletters Patient Stories and Support Research View All Articles Most Recent Posts Aortic Dissection Awareness Week (September 14 – 20, 2025) Read More » 9 September 2025 From Rare to Recognized – LDSFC at the 29th Canadian Connective Tissue Conference (CCTC) Read More » 2 July
- [Blog - All Articles](https://loeysdietzcanada.org/blog/all-blog-articles/) - Blog – All Articles Aortic Dissection Awareness Week (September 14 – 20, 2025) Read More » 9 September 2025 From Rare to Recognized – LDSFC at the 29th Canadian Connective Tissue Conference (CCTC) Read More » 2 July 2025 What Does Scoliosis Look Like with LDS & Other Connective Tissue Disorders? Read More » 20
- [Clinicians](https://loeysdietzcanada.org/clinicians/) - Resources for Clinicians and Medical Professionals Loeys-Dietz syndrome (LDS) is a genetic connective tissue disorder with multisystem involvement and variability in the type and severity of manifestations. It is best monitored and treated by a multidisciplinary team. Head-to-Toe of Features Observed in Loeys-Dietz Syndrome Features are described by body system, symptoms, diagnostic test, treatment, and more.
- [Cliniciens](https://loeysdietzcanada.org/clinicians/) - Ressources pour les cliniciens et professionnels de la santé Le syndrome de Loeys-Dietz (SLD) est une maladie génétique du tissu conjonctif avec une atteinte multisystémique et une variabilité dans le type et la sévérité des manifestations. Ce syndrome est mieux suivi et traité par une équipe multidisciplinaire. De la tête aux pieds des caractéristiques observées dans le
- [Conference Resources](https://loeysdietzcanada.org/conference-resources/) - Conference Resources The 29th Annual Canadian Connective Tissue Conference Booth Resources Thank you for visiting us! Resources for Researchers resources for clinicians About Heritable Thoracic Aortic Disease About Loeys-Dietz Syndrome about Marfan syndrome about vascular Ehlers-Danlos syndrome Stay in Touch! Subscribe to our Newsletter Questions? Please contact us here: Message Send
- [Ressources de la conférence](https://loeysdietzcanada.org/conference-resources/) - Ressources de la conférence La 29e Conférence annuelle canadienne sur le tissu conjonctif ressources du stand Merci de votre visite ! ressources pour les chercheurs ressources pour les cliniciens À propos de la maladie héréditaire de l'aorte thoracique à propos du syndrome de Loeys-Dietz à propos du syndrome de Marfan à propos du syndrome d'Ehlers-Danlos
- [Événements](https://loeysdietzcanada.org/get-involved/our-events/) - Nos événements 1 event found. Events Events Search and Views Navigation Search Enter Keyword. Search for Events by Keyword. Find Events Event Views Navigation List List Month Day Today Upcoming Upcoming Select date. May 2026 Fri 22 4th Heritable Aortic Disorders Symposium May 22 – May 23 Vancouver, BC Vancouver, British Columbia, Canada Previous Events
- [Events](https://loeysdietzcanada.org/get-involved/our-events/) - Our Events 1 event found. Events Events Search and Views Navigation Search Enter Keyword. Search for Events by Keyword. Find Events Event Views Navigation List List Month Day Today Upcoming Upcoming Select date. May 2026 Fri 22 4th Heritable Aortic Disorders Symposium May 22 – May 23 Vancouver, BC Vancouver, British Columbia, Canada Previous Events
- [Your Story Matters. Share it. Votre histoire compte. Partagez-la.](https://loeysdietzcanada.org/share-your-story/)
- [Loeys-Dietz Syndrome and Medication](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/medication/) - Medication is often a part of daily life for people with LDS. Find out which medications are recommended, to be avoided, and to be used with caution
- [Le syndrome de Loeys-Dietz et les médicaments](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/medication/) - Poursuivez votre lecture pour découvrir quels sont les médicaments recommandés, à éviter et à utiliser avec précaution chez les personnes atteintes du SLD.
- [Treatment](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/treatment/) - Treatment Treatment Philosophies for Loeys-Dietz Syndrome An individualized approach Treatment and management differ from person to person because LDS can affect individuals in different ways. Multidisciplinary care Loeys-Dietz syndrome can produce symptoms throughout the whole body. With multidisciplinary care, medical specialists from different disciplines can address different areas of the body. Team membersThis team may include
- [Bien vivre avec le SLD](https://loeysdietzcanada.org/patient-support/living-well-with-lds/) - Bien vivre avec le SLD Au moment du diagnostic, les personnes atteintes du SLD peuvent recevoir des examens d’imagerie, des traitements pour leurs symptômes visibles, et des soins médicaux d’urgence. Cependant, les facteurs qui ont un impact sur leur qualité de vie (douleur, santé mentale et exercice) sont souvent négligés et laissent les personnes et les
- [Living Well with LDS](https://loeysdietzcanada.org/patient-support/living-well-with-lds/) - Living Well with LDS Around the time of diagnosis, individuals with Loeys-Dietz syndrome (LDS) may receive imaging, treatment for noticeable symptoms, and emergency medical care.However, factors that impact quality of life (pain, mental health, and exercise) are often overlooked and leave people and families with more questions than answers. It is best to address these
- [Traitement](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/treatment/) - Traitement Philosophies de traitement pour le syndrome de Loeys-Dietz Une approche individualisée Le traitement et la prise en charge diffèrent d’une personne à l’autre car le SLD peut affecter les individus de manières variées. Soins multidisciplinaires Le syndrome de Loeys-Dietz touche plusieurs systèmes corporels et est donc mieux pris en charge par une équipe multidisciplinaire
- [Types de don](https://loeysdietzcanada.org/ways-to-give/donation-options/) - Types de don Vos dons généreux nous permettent d’améliorer et de sauver des vies dans la communauté du syndrome de Loeys-Dietz (SLD). Il existe de nombreuses façons de donner et de faire la différence pour les personnes atteintes du SLD. Merci beaucoup de votre intérêt et de votre soutien. La mission de la FSLDC est de
- [Donations Options](https://loeysdietzcanada.org/ways-to-give/donation-options/) - Donations Options Your generous donations allow us to improve and save lives in the Loeys-Dietz syndrome (LDS) community. There are many ways to give and make a difference for people with LDS. Thank you very much for your interest and support. LDSFC’s mission is to foster research, raise awareness, encourage education, and support patients and families
- [La génétique](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/genetics/) - La génétique Le syndrome de Loeys-Dietz (SLD) est une maladie génétique causée par une mutation (changement) dans les gènes SMAD2, SMAD3, TGFB2, TGFB3, TGFBR1 ou TGFBR2. Types du syndrome de Loeys-Dietz Il existe six types du syndrome de Loeys-Dietz. Chacun est causé par des mutations dans un gène différent :Le syndrome de Loeys-Dietz de type
- [Genetics](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/genetics/) - Genetics Loeys-Dietz syndrome (LDS) is a genetic disorder caused by a mutation (change) in the SMAD2, SMAD3, TGFB2, TGFB3, TGFBR1, or TGFBR2 genes. Types of Loeys-Dietz Syndrome There are six types of Loeys-Dietz syndrome. Each type is caused by mutations in a different gene:Loeys-Dietz syndrome 1 (LDS1) caused by mutations in the TGFBR1 gene (transforming growth factor beta
- [CAN-ACT Registry Questions Survey](https://loeysdietzcanada.org/can-act-registry-questions-survey/)
- [Mindfulness for Chronic Pain](https://loeysdietzcanada.org/mindfulness-for-chronic-pain/)
- [Mindfulness Weekly Check-In](https://loeysdietzcanada.org/mindfulness-weekly-check-in/)
- [Intro to Mindfulness Video Confirmation](https://loeysdietzcanada.org/intro-to-mindfulness-video-confirmation/)
- [Chronic Pain Scale](https://loeysdietzcanada.org/chronic-pain-scale/)
- [Inscription au programme pilote de pleine conscience](https://loeysdietzcanada.org/fr/inscription-au-programme-pilote-de-pleine-conscience/)
- [Mindfulness Pilot Program Registration](https://loeysdietzcanada.org/mindfulness-pilot-program-registration/)
- [2024 CAN-ACT National Investigator Meeting](https://loeysdietzcanada.org/2024-can-act-meeting/) - 2024 CAN-ACT National Investigator Meeting This event is co-funded by the Canadian Institutes of Health Research (CIHR) and the Loeys-Dietz Syndrome Foundation Canada (LDSFC). Hosted at the Marriott Fairfield Inn & Suites Montreal Airport Hotel, 7700, Avenue Michel Jasmin, Dorval (Montréal), QC on Friday, May 31, 2024. Registration This event is invite only.Registration Deadline: April
- [Registration: 2024 CAN-ACT Meeting](https://loeysdietzcanada.org/registration-2024-can-act-meeting/)
- [PARTNERSHIP SERVICING AGREEMENT](https://loeysdietzcanada.org/partnership-servicing-agreement/)
- [LEAP Coaching Attendance Report](https://loeysdietzcanada.org/leap-coaching-form/)
- [CAN-ACT Financial Report](https://loeysdietzcanada.org/can-act-financial-report/)
- [CAN-ACT Progress Report](https://loeysdietzcanada.org/can-act-progress-report/) - Please enable JavaScript in your browser to complete this form.Please enable JavaScript in your browser to complete this form. ProjectProject Title *Principal Investigator Name *FirstLastName of Person Completing Form *FirstLastCurrent Reporting PeriodAll information provided below should reflect progress made during this time period.Beginning of Reporting Period *End of Reporting Period *BackgroundState the overall objective of
- [LEAP Financial Report - 6 Month Statement of Account](https://loeysdietzcanada.org/leap-financial-report-6-months/)
- [LEAP Progress Report - 6 Months](https://loeysdietzcanada.org/leap-progress-report-6-months/)
- [CONSENT WITH RESPECT TO TREATMENT OF PERSONAL INFORMATION](https://loeysdietzcanada.org/consent-re-personal-information/)
- [Formulaire d'inscription à un groupe de soutien](https://loeysdietzcanada.org/formulaire-dinscription-a-un-groupe-de-soutien/)
- [Support Group Intake Form](https://loeysdietzcanada.org/support-group-intake-form/)
- [AFC Application Input Form](https://loeysdietzcanada.org/afc-application-input-form/)
- [PPI Supports LDSFC](https://loeysdietzcanada.org/ways-to-give/ppigives/) - PPI Supports LDSFC
- [Mois de la sensibilisation au syndrome de Loeys-Dietz 2023](https://loeysdietzcanada.org/get-involved/loeys-dietz-syndrome-awareness-month-2023/) - Participez à notre campagne d'un mois visant à sensibiliser le public au syndrome de Loeys-Dietz (SLD) et à exprimer l'unicité dans la communauté SLD.
- [Loeys-Dietz Syndrome Awareness Month 2023](https://loeysdietzcanada.org/get-involved/loeys-dietz-syndrome-awareness-month-2023/) - Join our month-long campaign to raise awareness for Loeys-Dietz syndrome (LDS) and embrace uniqueness in the LDS community.
- [Qu'est-ce que le tissu conjonctif ?](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/what-is-connective-tissue/) - Qu'est-ce que le tissu conjonctif ? Le syndrome de Loeys-Dietz (SLD) est une maladie génétique qui affecte le tissu conjonctif de l’organisme. Qu'est-ce que le tissu conjonctif ? Le tissu conjonctif sert à connecter, soutenir, et aider à lier les autres tissus de l’organisme. Les différents types de tissu conjonctif comprennent les cellules adipeuses, les cellules
- [What is Connective Tissue?](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/what-is-connective-tissue/) - What is Connective Tissue? Loeys-Dietz syndrome (LDS) is a genetic disorder that affects the body’s connective tissue. What is Connective Tissue? Connective tissue serves to connect, support, and help bind other tissues in the body. Different types of connective tissue include fat-storing (adipose) cells, bone cells, red and white blood cells, as well as the loose
- [Signes et symptômes](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/signs-and-symptoms/) - Signes et symptômes Il existe une variété de symptômes du syndrome de Loeys-Dietz (SLD), qui peuvent se manifester de manière légère à grave, et affectent de nombreuses parties du corps. Le SLD peut se présenter différemment d’un individu à l’autre, même s’ils ont le même type (types 1 à 6), ou encore même s’ils sont
- [Signs and Symptoms](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/signs-and-symptoms/) - Signs and Symptoms Loeys-Dietz syndrome (LDS) symptoms can range from mild to severe and affect many areas of the body. LDS can affect individuals differently, even when they have the same type (types 1-6) or are from the same family. Learn the Types of LDS Signs and Symptoms The most common features of LDS involve the
- [Vocabulaire relié au SLD](https://loeysdietzcanada.org/patient-support/lds-vocabulary/) - Vocabulaire relié au SLDpour patients et familles Sur cette page Spécialistes de la santé Adjoint au médecin (A. M.) : praticien agréé qui pratique la médecine sous la supervision d’un médecin agréé.Allergologue/immunologiste : médecin qui se spécialise dans les allergies ou le système immunitaire ou les deux.Audiologiste : professionnel de la santé qui effectue divers examens de l’ouïe.Cardiologue :
- [LDS Vocabulary](https://loeysdietzcanada.org/patient-support/lds-vocabulary/) - LDS Vocabulary for Patients and Families On This Page Medical Specialists Allergist/Immunologist: doctor who specializes in allergies and/or the immune systemAudiologist: healthcare professional who performs a variety of hearing examsCardiologist: doctor who specializes in the structure and function of the heartCardiothoracic Surgeon: surgeon who performs operations to repair the heart and the aortaDietitian: (also dietician)
- [Rare Disease Day](https://loeysdietzcanada.org/rare/) - Text This Rare Disease Day, we are celebrating you. Celebrate with us by reading our LDS stories and joining our “I’m Rare and I’mPerfect” campaign. Our LDS Stories Hélène“After over 20 years of doctors telling me not to worry about having Marfan syndrome, my son and I were diagnosed with Loeys-Dietz syndrome (LDS) type 2."
- [Je suis rare & je suis parfait](https://loeysdietzcanada.org/rare/) - Text En cette Journée des maladies rares, nous vous célébrons.Célébrez avec nous en lisant nos témoignages sur le SLD et en rejoignant notre campagne « Je suis rare & je suis parfait. » Nos témoignages sur le SLD Hélène« Après plus de 20 ans pendant lesquels les médecins m’ont dit que je ne devais pas
- [Our Volunteers](https://loeysdietzcanada.org/get-involved/our-volunteers/) - Our Volunteers Why become a volunteer? It is the perfect opportunity to make a difference in the Loeys-Dietz syndrome community. Do you have spare time on your hands or special skills that you would like to share? No matter how little or how much you are able to give, we are always grateful. Ways to
- [À propos de la Fondation du syndrome Loeys-Dietz Canada](https://loeysdietzcanada.org/our-foundation/about-us/) - À propos de la Fondation du syndrome Loeys-Dietz Canada Un rêve commun En octobre 2010, trois familles canadiennes touchées par le syndrome de Loeys-Dietz (SLD) se sont assises autour d’une table de salle à manger avec un rêve commun : celui d’une fondation canadienne capable de promouvoir l’éducation, de favoriser la recherche et de fournir
- [About Us](https://loeysdietzcanada.org/our-foundation/about-us/) - About the Loeys-Dietz Syndrome Foundation Canada A Shared Dream In October 2010, three Canadian families affected by Loeys-Dietz syndrome (LDS) sat around a dining room table with a shared dream – of a Canadian Foundation able to encourage education, foster research, and provide support to LDS patients and families. Less than a year later, in
- [Préparation de l'intervention chirurgicale](https://loeysdietzcanada.org/patient-support/preparing-for-surgery/) - Préparation de l'intervention chirurgicale Les personnes atteintes du syndrome de Loeys-Dietz (SLD) peuvent être amenées à subir une intervention chirurgicale. Cette page offre des informations sur plusieurs types de chirurgie et sur la manière de s’y préparer en tant que patient et parent. trouvez de l'aide Sur cette page Qu'est-ce que la chirurgie vasculaire ?
- [Preparing for Surgery](https://loeysdietzcanada.org/patient-support/preparing-for-surgery/) - Preparing for Surgery People with Loeys-Dietz syndrome (LDS) may need to undergo surgery. This page offers information on several types of surgery and how to prepare for surgery as a patient and parent. find help On This Page What is Vascular Surgery? Vascular surgery is performed in individuals with LDS to repair circulatory system manifestations.It is
- [Research](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/research/) - Loeys-Dietz Syndrome Research Loeys-Dietz syndrome (LDS) research is essential. Research helps families to receive an early and accurate diagnosis and helps medical practitioners provide patients with care that is effective, high-quality, and individualized.The Foundation funds and supports LDS research through the LEAP Impact Award granting program, GRIP database, CAN-ACT registry, and other initiatives. Learn more about
- [Recherche sur le syndrome de Loeys-Dietz](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/research/) - Recherche sur le syndrome de Loeys-Dietz La recherche sur le syndrome de Loeys-Dietz (SLD) est nécessaire et essentielle, afin d’améliorer le taux de survie et la qualité de vie. Avec la recherche, nous serons en mesure de développer de meilleurs traitements, d’avoir un diagnostic précoce et précis, et d’aider les médecins à fournir aux patients
- [Syndrome de Loeys-Dietz](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/) - Le syndrome de Loeys-Dietz Qu'est-ce que le syndrome de Loeys-Dietz (SLD) ? Le syndrome de Loeys-Dietz est une maladie génétique rare qui affecte le tissu conjonctif. Le SLD a été décrit pour la première fois en 2005 par les docteurs Bart Loeys et Hal Dietz. Signes et symptômes Il existe une variété de symptômes du syndrome
- [About Loeys-Dietz Syndrome](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/) - About Loeys-Dietz Syndrome What is Loeys-Dietz syndrome (LDS)? Loeys-Dietz syndrome is a rare, genetic condition that affects the body’s connective tissue. LDS was first described in 2005 by Dr. Bart Loeys and Dr. Hal Dietz. Signs and Symptoms Loeys-Dietz syndrome (LDS) symptoms may range from mild to severe and may be found in different areas of the body.
- [Recevoir un diagnostic de syndrome de Loeys-Dietz](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/receive-a-diagnosis/) - Recevoir un diagnostic de syndrome de Loeys-Dietz Après avoir reçu un diagnostic de syndrome de Loeys-Dietz (SLD), les patients et les familles peuvent ressentir une série d’émotions complexes et intenses telles que le sentiment d’être déboussolé, la peur, l’anxiété, la colère, la culpabilité et une perte de contrôle. À chaque étape, nous sommes là pour
- [Receive a Diagnosis](https://loeysdietzcanada.org/about-loeys-dietz-syndrome/receive-a-diagnosis/) - Receive a Loeys-Dietz Syndrome Diagnosis After receiving a Loeys-Dietz syndrome (LDS) diagnosis, patients and families may feel a range of complex and intense emotions such as disbelief, fear, anxiety, anger, guilt, and a loss of control.Each step of the way, we are here for you. Find Support Loeys-Dietz Syndrome Diagnostic Criteria For a person without
- [Faire un don](https://loeysdietzcanada.org/ways-to-give/donate/) - Faire un don
- [Donate](https://loeysdietzcanada.org/ways-to-give/donate/) - Donate
- [Nos bénévoles](https://loeysdietzcanada.org/get-involved/our-volunteers/) - Nos bénévoles Pourquoi devenir bénévole ? C’est l’occasion idéale de faire une différence dans la communauté du syndrome de Loeys-Dietz. Vous avez du temps libre ou des compétences particulières que vous aimeriez partager ? Quelle que soit l’ampleur de votre contribution, nous vous en sommes toujours reconnaissants. Voici quelques façons de devenir bénévole : Lancez
- [Lancer une collecte de fonds](https://loeysdietzcanada.org/get-involved/start-a-fundraiser/) - Lancer une collecte de fonds Une collecte de fonds pour le syndrome de Loeys-Dietz est l’un des meilleurs moyens de soutenir la Fondation et de sensibiliser votre communauté. Comment organiser une collecte de fonds Faire un planLa collecte de fonds pour la Fondation commence par un objectif et un plan. Quel est le montant que
- [Établir les liens](https://loeysdietzcanada.org/our-foundation/connecting-the-dots/) - Établir les liens Le slogan de la Fondation, Établir les liens, est un hommage à la communauté du syndrome de Loeys-Dietz (SLD) et à l’importance de relier les personnes, les symptômes, les ressources et les solutions. Relier les symptômes En tant que trouble du tissu conjonctif, le syndrome de Loeys-Dietz établit les liens entre une
- [Start a Fundraiser](https://loeysdietzcanada.org/get-involved/start-a-fundraiser/) - Start a Fundraiser A Loeys-Dietz syndrome fundraiser is one of the best ways you can support the Foundation and raise awareness in your community. How to organize a fundraiser 1. Make a planRaising money for the Foundation starts with a goal and a plan. How much do I want to raise? How do I want
- [Ways to Give](https://loeysdietzcanada.org/ways-to-give/) - Ways to Give Title here (H2) This is a lead paragraph. Quisque tincidunt egestas quam. Cras eu tristique augue. Cras tellus mi, pharetra et justo et, mattis ullamcorper tellus. Cras dignissim odio dignissim quam cursus lobortis. Nunc feugiat nibh quis eros tempor tristique a ut ipsum. Vivamus ornare eleifend justo. Fusce sit amet ornare nunc.
- [Our Foundation](https://loeysdietzcanada.org/our-foundation/) - Our Foundation The title I want here This is a lead paragraph. Quisque tincidunt egestas quam. Cras eu tristique augue. Cras tellus mi, pharetra et justo et, mattis ullamcorper tellus. Cras dignissim odio dignissim quam cursus lobortis. Nunc feugiat nibh quis eros tempor tristique a ut ipsum. Vivamus ornare eleifend justo. Fusce sit amet ornare
- [Patient Support](https://loeysdietzcanada.org/patient-support/) - Patient Support The title I want here This is a lead paragraph. Quisque tincidunt egestas quam. Cras eu tristique augue. Cras tellus mi, pharetra et justo et, mattis ullamcorper tellus. Cras dignissim odio dignissim quam cursus lobortis. Nunc feugiat nibh quis eros tempor tristique a ut ipsum. Vivamus ornare eleifend justo. Fusce sit amet ornare
- [test1](https://loeysdietzcanada.org/fr/test1/)
- [Get Involved](https://loeysdietzcanada.org/get-involved/) - Get Involved The title I want here This is a lead paragraph. Quisque tincidunt egestas quam. Cras eu tristique augue. Cras tellus mi, pharetra et justo et, mattis ullamcorper tellus. Cras dignissim odio dignissim quam cursus lobortis. Nunc feugiat nibh quis eros tempor tristique a ut ipsum. Vivamus ornare eleifend justo. Fusce sit amet ornare
- [Connecting the Dots](https://loeysdietzcanada.org/our-foundation/connecting-the-dots/) - Connecting the Dots The Foundation’s slogan, Connecting the dots, is an homage to the Loeys-Dietz syndrome (LDS) community and to the importance of connecting symptoms, people, care, and resources. Connecting Symptoms As a connective tissue condition, Loeys-Dietz syndrome is connecting the dots between a variety of symptoms that may appear throughout the body, range in
- [Soutien aux patients](https://loeysdietzcanada.org/patient-support/) - Soutien aux patients The title I want here This is a lead paragraph. Quisque tincidunt egestas quam. Cras eu tristique augue. Cras tellus mi, pharetra et justo et, mattis ullamcorper tellus. Cras dignissim odio dignissim quam cursus lobortis. Nunc feugiat nibh quis eros tempor tristique a ut ipsum. Vivamus ornare eleifend justo. Fusce sit amet
- [Events](https://loeysdietzcanada.org/events/) - 1 event found. Events Events Search and Views Navigation Search Enter Keyword. Search for Events by Keyword. Find Events Event Views Navigation List List Month Day Today Upcoming Upcoming Select date. May 2026 Fri 22 4th Heritable Aortic Disorders Symposium May 22 - May 23 Vancouver, BC Vancouver, British Columbia, Canada Previous Events Today Next
- [Ways to Give](https://loeysdietzcanada.org/ways-to-give/) - Ways to Give Title here (H2) This is a lead paragraph. Quisque tincidunt egestas quam. Cras eu tristique augue. Cras tellus mi, pharetra et justo et, mattis ullamcorper tellus. Cras dignissim odio dignissim quam cursus lobortis. Nunc feugiat nibh quis eros tempor tristique a ut ipsum. Vivamus ornare eleifend justo. Fusce sit amet ornare nunc.
- [Notre fondation](https://loeysdietzcanada.org/our-foundation/) - Notre fondation The title I want here This is a lead paragraph. Quisque tincidunt egestas quam. Cras eu tristique augue. Cras tellus mi, pharetra et justo et, mattis ullamcorper tellus. Cras dignissim odio dignissim quam cursus lobortis. Nunc feugiat nibh quis eros tempor tristique a ut ipsum. Vivamus ornare eleifend justo. Fusce sit amet ornare
- [S'impliquer](https://loeysdietzcanada.org/get-involved/) - S’impliquer The title I want here This is a lead paragraph. Quisque tincidunt egestas quam. Cras eu tristique augue. Cras tellus mi, pharetra et justo et, mattis ullamcorper tellus. Cras dignissim odio dignissim quam cursus lobortis. Nunc feugiat nibh quis eros tempor tristique a ut ipsum. Vivamus ornare eleifend justo. Fusce sit amet ornare nunc.
- [Événements](https://loeysdietzcanada.org/events/) - 1 event found. Events Events Search and Views Navigation Search Enter Keyword. Search for Events by Keyword. Find Events Event Views Navigation List List Month Day Today Upcoming Upcoming Select date. May 2026 Fri 22 4th Heritable Aortic Disorders Symposium May 22 - May 23 Vancouver, BC Vancouver, British Columbia, Canada Previous Events Today Next
- [HAD Symposium](https://loeysdietzcanada.org/?page_id=900) - HAD Symposium The title I want here This is a lead paragraph. Quisque tincidunt egestas quam. Cras eu tristique augue. Cras tellus mi, pharetra et justo et, mattis ullamcorper tellus. Cras dignissim odio dignissim quam cursus lobortis. Nunc feugiat nibh quis eros tempor tristique a ut ipsum. Vivamus ornare eleifend justo. Fusce sit amet ornare
- [Base template - Do not delete or update](https://loeysdietzcanada.org/?page_id=646) - Base template – Do not delete or update Title here (H2) This is a lead paragraph. Quisque tincidunt egestas quam. Cras eu tristique augue. Cras tellus mi, pharetra et justo et, mattis ullamcorper tellus. Cras dignissim odio dignissim quam cursus lobortis. Nunc feugiat nibh quis eros tempor tristique a ut ipsum. Vivamus ornare eleifend justo.

## Mega Menu Items

- [elementor-mega-item-8850](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-8850/) - S’impliquer Événements Nos bénévoles Lancer une collecte de fonds Moyens de donner Types de don Faire un don Liens connexes Ressources pour les patients et familles Glossaire Posez une question
- [elementor-mega-item-8840](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-8840/) - Soutien aux patients Trouver de l’aide Où trouver une Clinique Préparation de l’intervention chirurgicale Bien vivre avec le SLD Vocabulaire relié au SLD Cliniciens Ressources pour les cliniciens et professionnels de la santé Le syndrome de Loeys-Dietz & les chercheurs Le syndrome de Loeys-Dietz & les chercheurs Registre CAN-ACT Prix Impact LEAP L’Outil d’inventaire mondial
- [elementor-mega-item-8826](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-8826/) - Syndrome de Loeys-Dietz Signes et symptômes Recevoir un diagnostic Traitement Recherche Génétique Qu'est-ce que le tissu conjonctif ? Médicaments Liens connexes Ressources pour les patients et familles Glossaire Posez une question
- [elementor-mega-item-8834](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-8834/) - Notre fondation À propos de la Fondation du syndrome Loeys-Dietz Canada Établir les liens Notre équipe Notre impact Rapports annuels Liens connexes Soutien aux patients Vocabulaire relié au SLD Posez une question
- [elementor-mega-item-8656](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-8656/) - Patient Support Find Help Where to Find a Clinic Preparing for Surgery Living Well with LDS LDS Vocabulary Clinician Support Resources for Clinicians & Medical Professionals Researcher Support LDS & Researchers CAN-ACT Registry LEAP Impact Award GRIP Related Links Resources for Patients & Families Glossary Ask a Question
- [default-mega-item-8656](https://loeysdietzcanada.org/jet-menu/default-mega-item-8656/) - Patient Support Find Help Where to Find a Clinic Preparing for Surgery Living Well with LDS LDS Vocabulary Clinician Support Resources for Clinicians & Medical Professionals Researcher Support LDS & Researchers CAN-ACT Registry LEAP Impact Award GRIP LDS Vocabulary Related Links Resources for Patients & Families Glossary Ask a Question
- [mega-item-7863](https://loeysdietzcanada.org/jet-menu/mega-item-7863/) - Get Involved Our Events Our Volunteers Start a Fundraiser Ways to Give Donation Options Make a Donation Related Links Resources for Patients & Families Glossary Ask a Question
- [mega-item-7867](https://loeysdietzcanada.org/jet-menu/mega-item-7867/) - Ways to Give Donations Options Make a Donation Related Links Resources for Patients & Families Glossary Ask a Question
- [mega-item-7857](https://loeysdietzcanada.org/jet-menu/mega-item-7857/) - Our Foundation About Us Connecting the Dots Our Team Our Impact Statements Related Links Resources for Patients & Families Glossary Ask a Question
- [elementor-mega-item-7851](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-7851/) - Patient Support Find Help Where to Find a Clinic Preparing for Surgery Living Well with LDS LDS Vocabulary Related Links Resources for Patients & Families Glossary Ask a Question
- [mega-item-7850](https://loeysdietzcanada.org/jet-menu/mega-item-7850/)
- [mega-item-7842](https://loeysdietzcanada.org/jet-menu/mega-item-7842/) - About Loeys-Dietz Syndrome Signs and Symptoms Receive a Diagnosis Treatment Research Genetics What is Connective Tissue? Medication Related Links Resources for Patients & Families Glossary Ask a Question
- [default-mega-item-7842](https://loeysdietzcanada.org/jet-menu/default-mega-item-7842/)
- [elementor-mega-item-4120](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-4120/)
- [elementor-mega-item-4473](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-4473/) - Syndrome de Loeys-Dietz Signes et symptômes Recevoir un diagnostic Traitement Recherche Génétique Qu'est-ce que le tissu conjonctif ? Médicaments Related Links Ressources pour les patients et familles Glossaire Posez une question
- [mega-item-1691](https://loeysdietzcanada.org/jet-menu/mega-item-1691/) - About Loeys-Dietz Syndrome Signs and Symptoms Receive a Diagnosis Treatment Research Genetics What is Connective Tissue? Medication Related Links Resources for Patients & Families Glossary Ask a Question
- [elementor-mega-item-7661](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-7661/)
- [elementor-mega-item-913](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-913/)
- [elementor-mega-item-4121](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-4121/)
- [elementor-mega-item-2336](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-2336/)
- [mega-item-880](https://loeysdietzcanada.org/jet-menu/mega-item-880/) - Get Involved Our Events Our Volunteers Start a Fundraiser Related Links Resources for Patients & Families Glossary Ask a Question
- [elementor-mega-item-2359](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-2359/) - Types de dons Types de dons Faire un don Liens complémentaires Ressources pour les familles et patients Glossaire Posez une question
- [elementor-mega-item-2348](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-2348/) - Notre fondation À propos Établir les liens Notre équipe Notre impact États financiers Liens complémentaires Ressources pour les patients et familles Glossaire Posez une question
- [mega-item-908](https://loeysdietzcanada.org/jet-menu/mega-item-908/) - Our Foundation About Us Connecting the Dots Our Team Our Impact Statements Related Links Resources for Patients & Families Glossary Ask a Question
- [mega-item-919](https://loeysdietzcanada.org/jet-menu/mega-item-919/) - Ways to Give Donations Options Make a Donation Related Links Resources for Patients & Families Glossary Ask a Question
- [mega-item-716](https://loeysdietzcanada.org/jet-menu/mega-item-716/) - Patient Support Find Help Where to Find a Clinic Preparing for Surgery Living Well with LDS LDS Vocabulary Related Links Resources for Patients & Families Glossary Ask a Question
- [elementor-mega-item-2342](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-2342/) - Soutien aux patients Trouvez de l'aide Où trouver une clinique Préparation de l'intervention chirurgicale Bien vivre avec le SLD Vocabulaire relié au SLD Related Links Ressources pour les patients et familles Glossaire Posez une question
- [elementor-mega-item-2354](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-2354/) - S'impliquer Nos événements Nos bénévoles Lancer une collecte de fonds Liens complémentaires Ressources pour les patients et familles Glossaire Posez une question
- [elementor-mega-item-2335](https://loeysdietzcanada.org/jet-menu/elementor-mega-item-2335/) - Le syndrome de Loeys-Dietz Signes et symptômes Recevoir un diagnostic Traitement Recherche sur le syndrome de Loeys-Dietz Génétique Qu'est-ce que le tissu conjonctif ? Liens complémentaires Ressources pour les patients et familles Glossaire Posez une question
- [mega-item-613](https://loeysdietzcanada.org/jet-menu/mega-item-613/) - Inform me About Loeys-Dietz Syndrome Clinical Diagnosis Differential Diagnosis Treatment Options Complications Medical Advances Genetics Head To Toe The Medical Advisory Council Related Links Resources for Patients & Families Glossary Ask a Question
- [mega-item-604](https://loeysdietzcanada.org/jet-menu/mega-item-604/) - Inform me About Loeys-Dietz Syndrome Clinical Diagnosis Differential Diagnosis Treatment Options Complications Medical Advances Genetics Head To Toe The Medical Advisory Council Related Links Resources for Patients & Families Glossary Ask a Question

## My Templates

- [Header EN](https://loeysdietzcanada.org/?elementor_library=elementor-header-621) - Content area
- [blog_en_full_page](https://loeysdietzcanada.org/fr/?elementor_library=blog_en_full_page) - blog_en_full_page Browse by Category Amiel's LDS Choronicles Education Events Newsletters Patient Stories and Support Research View All Articles Most Recent Posts Aortic Dissection Awareness Week (September 14 – 20, 2025) Read More » 9 September 2025 From Rare to Recognized – LDSFC at the 29th Canadian Connective Tissue Conference (CCTC) Read More » 2 July
- [blog_en_page_template](https://loeysdietzcanada.org/fr/?elementor_library=blog_en_page_template) - blog_en_page_template Browse by Category Amiel's LDS Choronicles Education Events Newsletters Patient Stories and Support Research View All Articles Most Recent Posts Aortic Dissection Awareness Week (September 14 – 20, 2025) Read More » 9 September 2025 From Rare to Recognized – LDSFC at the 29th Canadian Connective Tissue Conference (CCTC) Read More » 2 July
- [blog_fr_original_23JUN25](https://loeysdietzcanada.org/fr/?elementor_library=blog_fr_original_23jun25) - blog_fr_original_23JUN25 Aortic Dissection Awareness Week (September 14 – 20, 2025) Seven leading North American nonprofits dedicated to aortic dissection awareness are uniting for the first time during Aortic Dissection Awareness Week 2025, urging the public to think “STAT” and recognize the signs of aortic emergencies to save lives. Aortic Hope, Genetic Aortic Disorders Association Canada
- [Header FR](https://loeysdietzcanada.org/?elementor_library=elementor-header-621) - Content area
- [blog_all_articles_preview](https://loeysdietzcanada.org/?elementor_library=blog_all_articles_preview) - Aortic Dissection Awareness Week (September 14 – 20, 2025) Read More » 9 September 2025 From Rare to Recognized – LDSFC at the 29th Canadian Connective Tissue Conference (CCTC) Read More » 2 July 2025 What Does Scoliosis Look Like with LDS & Other Connective Tissue Disorders? Read More » 20 June 2025 Newsletter: Empowering
- [mega-menu_trio_content](https://loeysdietzcanada.org/?elementor_library=mega-menu_trio_content) - Patient Support Find Help Where to Find a Clinic Preparing for Surgery Living Well with LDS LDS Vocabulary Clinician Support Resources for Clinicians & Medical Professionals Researcher Support LDS & Researchers CAN-ACT Registry LEAP Impact Award GRIP LDS Vocabulary Related Links Resources for Patients & Families Glossary Ask a Question
- [MegaMenu-Patient_Support](https://loeysdietzcanada.org/?elementor_library=megamenu-patient_support) - Patient Support Find Help Where to Find a Clinic Preparing for Surgery Living Well with LDS LDS Vocabulary Related Links Resources for Patients & Families Glossary Ask a Question
- [Default Kit](https://loeysdietzcanada.org/?elementor_library=default-kit)
- [The Events Calendar - Starter](https://loeysdietzcanada.org/?elementor_library=the-events-calendar-starter) - « All Events This event has passed. postponed (DEMO) This event has been postponed. Your Events Calendar Template February 22 @ 14h39 $10 Categories: Demo Category Tags: demo-tag-1, demo-tag-2 Website: http://theeventscalendar.com John Doe 555-555-5555 View Organizer Website info@theeventscalendar.com Mock Venue 1005 S Michigan Ave Chicago, Illinois United States + Google Map 123-456-7890 View Venue Website
- [The Events Calendar - Dynamic template](https://loeysdietzcanada.org/?elementor_library=the-events-calendar-dynamic-template) - « All Events This event has passed. postponed (DEMO) This event has been postponed. Your Events Calendar Template February 22 @ 14h39 $10 Les principales organisations nord-américaines de sensibilisation aux dissections aortiques s’unissent pour sauver des vies pendant la Semaine de sensibilisation aux dissections aortiques (du 14 au 20 septembre 2025) Sept grandes associations
- [Elementor Archive #4417](https://loeysdietzcanada.org/fr/?elementor_library=elementor-archive-4417) - Template: Elementor Archive #4417 Aortic Dissection Awareness Week (September 14 – 20, 2025) 9 September 2025 No Comments Seven leading North American nonprofits dedicated to aortic dissection awareness Read More » From Rare to Recognized – LDSFC at the 29th Canadian Connective Tissue Conference (CCTC) 2 July 2025 No Comments From May 26th to 28th,
- [Elementor Single Post #3878](https://loeysdietzcanada.org/?elementor_library=elementor-single-post-3878) - Elementor Single Post #3878 Les principales organisations nord-américaines de sensibilisation aux dissections aortiques s’unissent pour sauver des vies pendant la Semaine de sensibilisation aux dissections aortiques (du 14 au 20 septembre 2025) Sept grandes associations nord-américaines de sensibilisation à la dissection aortique s’unissent pour la première fois à l’occasion de la Semaine de sensibilisation
- [Elementor Single Post #1715](https://loeysdietzcanada.org/?elementor_library=elementor-single-post-1715) - Elementor Single Post #1715 doctor who specializes in allergies and/or the immune system
- [Elementor Archive #1697](https://loeysdietzcanada.org/?elementor_library=elementor-archive-1697) - Glossary Medical Specialists • Audiologist • Allergist/Immunologist Cardiovascular (Heart & Circulatory System) • Aneurysm Heart Defects No data was found Craniofacial (Head & Face) No data was found Genetics No data was found Medications No data was found Neurological No data was found Skeletal No data was found Skin No data was found Special Monitoring
- [Base template](https://loeysdietzcanada.org/?elementor_library=base-template) - Base template The title I want here This is a lead paragraph. Quisque tincidunt egestas quam. Cras eu tristique augue. Cras tellus mi, pharetra et justo et, mattis ullamcorper tellus. Cras dignissim odio dignissim quam cursus lobortis. Nunc feugiat nibh quis eros tempor tristique a ut ipsum. Vivamus ornare eleifend justo. Fusce sit amet ornare
- [Kit par défaut](https://loeysdietzcanada.org/?elementor_library=kit-par-defaut)

## Glossary

- [Aneurysm](https://loeysdietzcanada.org/glossary/aneurysm/) - widening or dilation of the aorta or other artery
- [Audiologist](https://loeysdietzcanada.org/glossary/audiologist/) - healthcare professional who performs a variety of hearing exams
- [Allergist/Immunologist](https://loeysdietzcanada.org/glossary/allergist-immunologist/) - doctor who specializes in allergies and/or the immune system

## Venues

- [Vancouver, BC](https://loeysdietzcanada.org/venue/vancouver-bc/)
- [Ottawa Marriott Hotel](https://loeysdietzcanada.org/venue/ottawa-marriott-hotel/)
- [Auberge Saint-Antoine Hotel](https://loeysdietzcanada.org/venue/auberge-saint-antoine-hotel/)
- [Cincinnati Children's Hospital](https://loeysdietzcanada.org/venue/cincinnati-childrens-hospital/)
- [Quebec City, Canada](https://loeysdietzcanada.org/venue/quebec-city-canada/)
- [Boston, MA](https://loeysdietzcanada.org/venue/boston-ma/)
- [Toronto, CA](https://loeysdietzcanada.org/venue/toronto-ca/)
- [Bologna, Italy](https://loeysdietzcanada.org/venue/bologna-italy/)
- [Atlanta, GA](https://loeysdietzcanada.org/venue/atlanta-ga/)
- [Hamburg, DE](https://loeysdietzcanada.org/venue/hamburg-de/)
- [Montreal, QC](https://loeysdietzcanada.org/venue/montreal-qc/)
- [Calgary, Canada](https://loeysdietzcanada.org/venue/calgary-canada/)
- [Brussels, Belgium](https://loeysdietzcanada.org/venue/brussels-belgium/)
- [New Orleans, USA](https://loeysdietzcanada.org/venue/new-orleans-usa/)
- [Venue name](https://loeysdietzcanada.org/venue/venue-name/)

## Organizers

- [Canadian Organization for Rare Disorders (CORD)](https://loeysdietzcanada.org/organizer/canadian-organization-for-rare-disorders-cord/)
- [Hearts in Rhythm Organization](https://loeysdietzcanada.org/organizer/hearts-in-rhythm-organization/)
- [Cincinnato Children's Hospital Medical Center](https://loeysdietzcanada.org/organizer/cincinnato-childrens-hospital-medical-center/)
- [ACTA2 Alliance](https://loeysdietzcanada.org/organizer/acta2-alliance/)
- [Canadian Cardiovascular Society](https://loeysdietzcanada.org/organizer/canadian-cardiovascular-society/)
- [International Consortium for Health Outcomes Measurement (ICHOM)](https://loeysdietzcanada.org/organizer/international-consortium-for-health-outcomes-measurement-ichom/)
- [The Ehlers-Danlos Society](https://loeysdietzcanada.org/organizer/the-ehlers-danlos-society/)
- [NOEMA Congressi](https://loeysdietzcanada.org/organizer/noema-congressi/)
- [International Congress Of Research On Rare and Orphan Diseases](https://loeysdietzcanada.org/organizer/international-congress-of-research-on-rare-and-orphan-diseases/)

## Events

- [4e Symposium sur les maladies héréditaires de l'aorte](https://loeysdietzcanada.org/event/4th-heritable-aortic-disorders-symposium/)
- [4th Heritable Aortic Disorders Symposium](https://loeysdietzcanada.org/event/4th-heritable-aortic-disorders-symposium/)
- [Rare Disease Conference Fall 2025](https://loeysdietzcanada.org/event/rare-disease-conference-fall-2025/) - Co-création du Plan d'action canadien sur les maladies rares Actualités et mises à jour Rencontres et échanges Dialogues interactifs Tableaux d'études de cas
- [Rare Disease Conference Fall 2025](https://loeysdietzcanada.org/event/rare-disease-conference-fall-2025/) - Co-Creating Canada's Rare Disease Action Plan Breaking news and updates Meet and connect Interactive dialogues Case study panels
- [Third International Conference on Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS)](https://loeysdietzcanada.org/event/third-international-conference-on-multisystemic-smooth-muscle-dysfunction-syndrome-msmds/)
- [2025 HiRO Annual Symposium](https://loeysdietzcanada.org/event/2025-hiro-annual-symposium/) - The HiRO Annual Symposium brings together the Canadian community of cardiogenetics specialists, researchers, patients, families and industry partners, with a goal to improve the care of families with inherited heart disease.
- [Marfan Foundation Conference](https://loeysdietzcanada.org/event/marfan-foundation-conference/)
- [Bologna Heart Surgery Symposium](https://loeysdietzcanada.org/event/bologna-heart-surgery-symposium/)
- [EDS International Conference](https://loeysdietzcanada.org/event/eds-international-conference/)
- [ICHOM Conference](https://loeysdietzcanada.org/event/ichom-conference/)
- [2025 Cincinnati Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS](https://loeysdietzcanada.org/event/2025-cincinnati-regional-symposium-living-better-with-marfan-loeys-dietz-and-veds/) - The 2025 Cincinnati Regional Symposium: Living Better with Marfan, Loey-Dietz, and VEDS, hosted by Cincinnati Children’s Hospital Medical Center in collaboration with the Marfan Foundation, promises to be an informative and engaging event. The symposium will focus on genetic aortic and vascular conditions and will feature two distinct days: a Provider Day (October 24) and
- [2025 Cincinnati Regional Symposium: Living Better with Marfan, Loeys-Dietz, and VEDS](https://loeysdietzcanada.org/event/2025-cincinnati-regional-symposium-living-better-with-marfan-loeys-dietz-and-veds/) - The 2025 Cincinnati Regional Symposium: Living Better with Marfan, Loey-Dietz, and VEDS, hosted by Cincinnati Children’s Hospital Medical Center in collaboration with the Marfan Foundation, promises to be an informative and engaging event. The symposium will focus on genetic aortic and vascular conditions and will feature two distinct days: a Provider Day (October 24) and
- [2025 HiRO Annual Symposium](https://loeysdietzcanada.org/event/2025-hiro-annual-symposium/) - The HiRO Annual Symposium brings together the Canadian community of cardiogenetics specialists, researchers, patients, families and industry partners, with a goal to improve the care of families with inherited heart disease.
- [Third International Conference on Multisystemic Smooth Muscle Dysfunction Syndrome (MSMDS)](https://loeysdietzcanada.org/event/third-international-conference-on-multisystemic-smooth-muscle-dysfunction-syndrome-msmds/)
- [Canadian Cardiology Society Conference](https://loeysdietzcanada.org/event/canadian-cardiology-society-conference/)
- [Canadian Cardiology Society Conference](https://loeysdietzcanada.org/event/canadian-cardiology-society-conference/)
- [ICHOM Conference](https://loeysdietzcanada.org/event/ichom-conference/)
- [EDS International Conference](https://loeysdietzcanada.org/event/eds-international-conference/)
- [Bologna Heart Surgery Symposium](https://loeysdietzcanada.org/event/bologna-heart-surgery-symposium/)
- [Marfan Foundation Conference](https://loeysdietzcanada.org/event/marfan-foundation-conference/)
- [Association of European Peadiatric Cardiology Conference](https://loeysdietzcanada.org/event/association-of-european-peadiatric-cardiology-conference/)
- [Association of European Peadiatric Cardiology Conference](https://loeysdietzcanada.org/event/association-of-european-peadiatric-cardiology-conference/)
- [Canadian Connective Tissue Association Conference](https://loeysdietzcanada.org/event/canadian-connective-tissue-association-conference/)
- [Canadian Connective Tissue Association Conference](https://loeysdietzcanada.org/event/canadian-connective-tissue-association-conference/)
- [Canadian Society of Cardiac Surgeons (Beyond Boundaries)](https://loeysdietzcanada.org/event/canadian-society-of-cardiac-surgeons-beyond-boundaries/)
- [Canadian Society of Cardiac Surgeons (Beyond Boundaries)](https://loeysdietzcanada.org/event/canadian-society-of-cardiac-surgeons-beyond-boundaries/)
- [Aortic Hope Event](https://loeysdietzcanada.org/event/aortic-hope-event/)
- [Aortic Hope Event](https://loeysdietzcanada.org/event/aortic-hope-event/)
- [ReACT drug discovery & IRDiRC](https://loeysdietzcanada.org/event/react-drug-discovery-irdirc/)
- [ReACT drug discovery & IRDiRC](https://loeysdietzcanada.org/event/react-drug-discovery-irdirc/)
- [ICOI](https://loeysdietzcanada.org/event/icoi/)
- [ICOI](https://loeysdietzcanada.org/event/icoi/)

## Categories

- [Non classé](https://loeysdietzcanada.org/category/non-classe/)
- [Patient Stories and Support](https://loeysdietzcanada.org/category/patient-stories-and-support/) - Our Heritable Thoracic Aortic Disorder (HTAD) stories are powerful, personal, and offer a real look into what it’s like to live with or care for someone with conditions such as Loeys-Dietz syndrome, Marfan syndrome, vascular Ehlers-Danlos syndrome, and related diagnoses. These stories are shared by individuals living with HTADs, their loved ones, medical professionals, and members of the broader community. They explore the medical, emotional, and social realities of these conditions—highlighting experiences like seeking a diagnosis, managing treatment, finding support, and navigating daily life with resilience and hope. In addition to personal stories, this section also includes helpful patient support information designed to connect, inform, and empower those affected by HTADs. Thank you to everyone who has shared their journey. If you’d like to contribute your story or experience, please contact us—we’d love to hear from you.
- [Patient Stories and Support](https://loeysdietzcanada.org/category/patient-stories-and-support/) - Our Heritable Thoracic Aortic Disorder (HTAD) stories are powerful, personal, and offer a real look into what it’s like to live with or care for someone with conditions such as Loeys-Dietz syndrome, Marfan syndrome, vascular Ehlers-Danlos syndrome, and related diagnoses. These stories are shared by individuals living with HTADs, their loved ones, medical professionals, and members of the broader community. They explore the medical, emotional, and social realities of these conditions—highlighting experiences like seeking a diagnosis, managing treatment, finding support, and navigating daily life with resilience and hope. In addition to personal stories, this section also includes helpful patient support information designed to connect, inform, and empower those affected by HTADs. Thank you to everyone who has shared their journey. If you’d like to contribute your story or experience, please contact us—we’d love to hear from you.
- [Events](https://loeysdietzcanada.org/category/events/) - Find events related to Heritable Thoracic Aortic Disorders (HTAD) here – including Loeys-Dietz syndrome (LDS), Marfan syndrome, vascular Ehlers-Danlos syndrome, and other genetic conditions that affect the aorta and connective tissue. These events cover a wide range of topics including clinical care, research advancements, patient support, and public awareness. In these blog posts, you can read about events that we host, attend, or exhibit at, as well as events organized by other trusted groups in the HTAD community. Whether you’re a clinician, researcher, patient, or caregiver, these events offer valuable opportunities to connect, learn, and engage. See our calendar for upcoming events here: https://loeysdietzcanada.org/events/ If you’re seeking guidance or support, contact our free Loeys-Dietz syndrome helpline here: https://loeysdietzcanada.org/contact-us/ Interested in partnering with us or sharing an event? We’d love to hear from you – please contact us: https://loeysdietzcanada.org/contact-us/
- [Events](https://loeysdietzcanada.org/category/events/) - Find events related to Heritable Thoracic Aortic Disorders (HTAD) here – including Loeys-Dietz syndrome (LDS), Marfan syndrome, vascular Ehlers-Danlos syndrome, and other genetic conditions that affect the aorta and connective tissue. These events cover a wide range of topics including clinical care, research advancements, patient support, and public awareness. In these blog posts, you can read about events that we host, attend, or exhibit at, as well as events organized by other trusted groups in the HTAD community. Whether you’re a clinician, researcher, patient, or caregiver, these events offer valuable opportunities to connect, learn, and engage. See our calendar for upcoming events here: https://loeysdietzcanada.org/events/ If you’re seeking guidance or support, contact our free Loeys-Dietz syndrome helpline here: https://loeysdietzcanada.org/contact-us/ Interested in partnering with us or sharing an event? We’d love to hear from you – please contact us: https://loeysdietzcanada.org/contact-us/
- [Amiel’s LDS Chronicles](https://loeysdietzcanada.org/category/patient-stories-and-support/amiels-lds-chronicles/) - “It is often said that traversing the medical world is difficult for any new patient. Building upon hours of medical appointments and lifechanging conditions, there are a lot of feelings and emotions to unpack in our personal journeys. Ranging from everyday difficulties to genuine health concerns, the purpose of this blog is to navigate the world of Loeys-Dietz Syndrome (LDS) and the challenges it brings. Written from the perspective of an LDS patient, get ready to go on a journey of grief, loss, acceptance, and hope as we learn to live with, and conquer, our diagnosis.” – Amiel Buning
- [Amiel’s LDS Chronicles](https://loeysdietzcanada.org/category/patient-stories-and-support/amiels-lds-chronicles/) - “It is often said that traversing the medical world is difficult for any new patient. Building upon hours of medical appointments and lifechanging conditions, there are a lot of feelings and emotions to unpack in our personal journeys. Ranging from everyday difficulties to genuine health concerns, the purpose of this blog is to navigate the world of Loeys-Dietz Syndrome (LDS) and the challenges it brings. Written from the perspective of an LDS patient, get ready to go on a journey of grief, loss, acceptance, and hope as we learn to live with, and conquer, our diagnosis.” – Amiel Buning
- [Newsletters](https://loeysdietzcanada.org/category/newsletters/) - Catch up on past issues of our newsletters, featuring updates on research, events, community stories, and resources related to Heritable Thoracic Aortic Disorders (HTADs). Stay informed and connected to our work and the HTAD community
- [Newsletters](https://loeysdietzcanada.org/category/newsletters/) - Catch up on past issues of our newsletters, featuring updates on research, events, community stories, and resources related to Heritable Thoracic Aortic Disorders (HTADs). Stay informed and connected to our work and the HTAD community
- [Education](https://loeysdietzcanada.org/category/education/) - If you or a loved one is affected by a Heritable Thoracic Aortic Disorder (HTAD)—such as Loeys-Dietz syndrome, Marfan syndrome, vascular Ehlers-Danlos syndrome, or another related condition—you may have questions about what life with one of these diagnoses will look like. These educational blog articles are designed to help. We cover a wide range of topics relevant to HTADs, including: genetics and inheritance, signs and symptoms across body systems, diagnosis and treatment planning, and long-term management. You’ll also find practical guidance on everyday life with a heritable aortic condition—covering areas such as exercise, nutrition, chronic pain, mental health, family planning, caregiving, and navigating school or work. If you have more questions or need support, please contact our free Loeys-Dietz syndrome helpline at 1-888-LDS-FCAN or here: https://loeysdietzcanada.org/contact-us/
- [Education](https://loeysdietzcanada.org/category/education/) - If you or a loved one is affected by a Heritable Thoracic Aortic Disorder (HTAD)—such as Loeys-Dietz syndrome, Marfan syndrome, vascular Ehlers-Danlos syndrome, or another related condition—you may have questions about what life with one of these diagnoses will look like. These educational blog articles are designed to help. We cover a wide range of topics relevant to HTADs, including: genetics and inheritance, signs and symptoms across body systems, diagnosis and treatment planning, and long-term management. You’ll also find practical guidance on everyday life with a heritable aortic condition—covering areas such as exercise, nutrition, chronic pain, mental health, family planning, caregiving, and navigating school or work. If you have more questions or need support, please contact our free Loeys-Dietz syndrome helpline at 1-888-LDS-FCAN or here: https://loeysdietzcanada.org/contact-us/
- [Research](https://loeysdietzcanada.org/category/research/) - Stay informed about the latest research shaping the future of care and understanding for Heritable Thoracic Aortic Disorders (HTADs), including Loeys-Dietz syndrome, Marfan syndrome, vascular Ehlers-Danlos syndrome, and related conditions. In this section, you’ll find blog articles highlighting current studies, scientific discoveries, clinical trials, and emerging therapies. We also share updates on research grants, insights from leading investigators, and the impact of patient participation in advancing science. Whether you’re a patient, caregiver, researcher, or clinician, these articles aim to make complex research accessible and relevant—helping you stay connected to the progress being made in the HTAD field.
- [Research](https://loeysdietzcanada.org/category/research/) - Stay informed about the latest research shaping the future of care and understanding for Heritable Thoracic Aortic Disorders (HTADs), including Loeys-Dietz syndrome, Marfan syndrome, vascular Ehlers-Danlos syndrome, and related conditions. In this section, you’ll find blog articles highlighting current studies, scientific discoveries, clinical trials, and emerging therapies. We also share updates on research grants, insights from leading investigators, and the impact of patient participation in advancing science. Whether you’re a patient, caregiver, researcher, or clinician, these articles aim to make complex research accessible and relevant—helping you stay connected to the progress being made in the HTAD field.

## Tags

- [Research](https://loeysdietzcanada.org/tag/research/)
- [LEAP Impact Award](https://loeysdietzcanada.org/tag/leap-impact-award/)
- [Recherche](https://loeysdietzcanada.org/fr/tag/recherche/)
- [Prix Impact LEAP](https://loeysdietzcanada.org/fr/tag/prix-impact-leap/)
- [Gastrointestinal](https://loeysdietzcanada.org/tag/gastrointestinal/)
- [LDS Symptoms](https://loeysdietzcanada.org/tag/lds-symptoms/)
- [LDS Treatment](https://loeysdietzcanada.org/tag/lds-treatment/)
- [Gastro-intestinaux](https://loeysdietzcanada.org/fr/tag/gastro-intestinaux/)
- [MII](https://loeysdietzcanada.org/fr/tag/mii/)
- [Symptômes du SLD](https://loeysdietzcanada.org/fr/tag/symptomes-du-sld/)
- [Traitement du SLD](https://loeysdietzcanada.org/fr/tag/traitement-du-sld/)
- [LDS Symptoms](https://loeysdietzcanada.org/tag/lds-symptoms/)