Find Help

To find a clinic:

• Specializing in genetics, cardiology, or connective tissue disorders like Loeys-Dietz syndrome, visit our Find an Aortic Clinic Directory. 
• Knowledgeable about connective tissue disorders and specializing in orthopedics, neurology, women’s health, obstetrics, fertility, otorhinolaryngology, contact us.

To find a clinic specializing in physiotherapy, occupational therapy, massage therapy, and other supportive care for heritable connective tissue disorders like Loeys-Dietz syndrome, visit our Find a Supportive Care Clinic Directory.

These clinics are knowledgeable about hypermobility-related challenges and associated musculoskeletal conditions.

Therapists and Helplines:

1. Find a therapist anywhere in Canada, from Psychology Today
2. List of helplines across Canada, from Crisis Services Canada Directory
3. Loeys-Dietz syndrome Helpline, from the Loeys-Dietz Syndrome Foundation Canada

Support Groups:

1. Loeys-Dietz Families Facebook Group
2. Loeys-Dietz Syndrome Support Group, from the Marfan Foundation
   • This group meets virtually on the 2nd Thursday of every month at 7pm EST.
3. Support Group for Parents or Guardians of Children with LDS, Marfan, or Related Conditions, from the Marfan Foundation
   • This group meets virtually on the third Wednesday of every month at 7 pm EST.
4.  Pain Management Support Group, from the Marfan Foundation
   • This group meets virtually on the 4th Thursday of every month at 7pm EST.
5. Scoliosis Support Group, from HiggyBears, maker of special bears for scoliosis patients
   • Support groups are for people with scoliosis of all ages – kids, tweens, teens, and adults. The groups offer a space for age-appropriate games and/or discussion on life with scoliosis. 
6. Online Peer Support for People Living with Heart Disease and their Caregivers, from Heart and Stroke Foundation Canada 
   • In English and French.
7. Canadian Directory of Genetic Support Groups
8. Loeys-Dietz Syndrome UK/Ireland/Channel Island Families Facebook Group
9. Support Group for Aortic Disease, from Aortic Hope
   • For people living with aortic disease, their caregivers, and their medical professional. 
   • This group meets virtually on the first Tuesday of every month at 2pm EST and on the last Wednesday of every month at 7pm EST.
10.  Caregivers Support Group, from Aortic Hope
    • For caregivers to people with aortic disease.
11. Bereavement Support Group, from Aortic Hope
    • For people who have lost loved ones to aortic dissection.

1. Benefits Finder, from the Government of Canada
2. Disability Tax Credit (DTC), from the Government of Canada
3. Registered Disability Savings Plan, from the Government of Canada
4. Child Disability Benefit (CDB), from the Government of Canada
5. Canada Pension Plan Disability Benefit, from the Government of Canada
6. Family Caregiving Benefits for Children and Adults, from the Government of Canada
7. Employment Insurance (EI) Sickness Benefit, from the Government of Canada
8. Northern Health Travel Grants, from the Government of Ontario
9. Hope Air
   • Email: mail@hopeair.ca
10. Financial Support, from the Heart and Stroke Foundation
11. Financial assistance for people with disability 

1. Head to Toe Document of LDS Signs and Symptoms
2. Loeys-Dietz Syndrome Do’s and Don’ts Factsheets, from VASCERN
3. Loeys-Dietz Syndrome (2018 Article by Dr. Loeys and Dr. Dietz)
4. Factsheets on LDS, from the Loeys-Dietz Syndrome Foundation
   • Allergy Facts
   • Caring for Cardiovascular Issues
   • Gastrointestinal Issues
   • Gene Associations
   • Arterial System
   • Siblings and Loeys-Dietz Syndrome
   • Bone Health in the Pediatric Population
5. LDS Medical Vocabulary, from LDSFC
6. LDS School Packet, from LDSFC
7. Preparing for Surgery
   1. Tips from adults on preparing for cardiothoracic surgery
   2. Tips from children and teenagers on preparing for surgery
   3. Cardiovascular Complications & Preparing for Surgery
8. Living Well with LDS: pain management, mental health, and exercising with LDS, from LDSFC
9. Factsheet on Joint Hypermobility, from CHEO
10. Factsheet on Heritable Thoracic Aneurysms and Dissections (H-TAAD): vocabulary, genetic testing, and inheritance information from Ottawa Cardiovascular Genetics
11. Tips for Physiotherapy, from Dr. Márcia Perretto
12. My Care Path (Online Informative Tool about Chronic Pain for Ages 12 to 17)
13. Knowing but Not Knowing: Finding out about your baby’s heart problem before they are born
14. Scoliosis Support Guide
15. Loeys-Dietz Syndrome and Medication
16. Family Planning with LDS
17. Emergency Preparedness for Loeys-Dietz Syndrome
18. Emergency Alert Card
19. What is LDS factsheet

Across Canada:

1. Canadian Coalition for Genetic Fairness
2. Pro Bono Resources in Canada
3. Genetic Discrimination and the Workplace: An Update on the Evolving Legal Landscape
4. Frequently Asked Questions regarding the Convention on the Rights of Persons with Disabilities
5. Lawyer Locate

In Quebec:

1. The Centre of Genomics and Policy
   • Affiliated with McGill University.
   • 740 Avenue Dr. Penfield, Suite 5200, Montreal, Quebec, H3A 0G1
   • Phone: 514-398-8155
   • Fax: 514-398-8954

In Ontario:

1. ARCH Disability Law Centre
   • 55 University Avenue, Toronto, Ontario, M5J 2H7
   • Phone: 416-482-8255
   • Phone Toll-Free: 1-866-482-2724   
   • TTY (teletypewriter): 416-482-1254 
   • TTY Toll-free: 1-866-482-2728
   • Fax: 416-482-2981
   • Fax Toll-free: 1-866-881-2723
   • Email: archgeneral@lao.on.ca
2. Pro Bono Ontario
   • Phone: 1-855-255-7256
3. Legal Aid Ontario
   • Phone: 416-979-1446
   • Phone Toll free: 1-800-668-8258
   • TTY (teletypewriter): 1-800-855-0511
   • Email: info@lao.on.ca

Each province has its own genetic testing guidelines. If you would like to learn more, ask your primary care provider for a referral to a genetics clinic or contact us. 

Information on Genetics:

1. Genetics and Loeys-Dietz Syndrome: types of LDS, mutations, genetic testing, and how your family may be affected
2. Genetics 101 and LDS-causing mutations in the TGF beta pathway 
3. Heritable Thoracic Aortic Disease: A Genetics Guide, from Genetics Education Canada – Knowledge Organization

1. Orphanet Directory of Related Organisations, Worldwide
2. Loeys-Dietz Syndrome Foundation, United States of America
3. Genetic Aortic Disorders Association (GADA) Canada
4. vEDS movement
5. GenTAC Alliance
6. The John Ritter Foundation for Aortic Health
7. Aortic Hope
8. The Aortic Dissection Charitable Trust
9. vEDS collaborative