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 […]
Navigating Family Planning with Loeys-Dietz Syndrome: A Comprehensive Guide Read More »
Written by: Amiel Buning “You Have it”. After months of waiting for an official diagnosis, my results were given to me through these three life-changing words. “You Have it”. “As
Trauma Response to A Life-Changing Diagnosis Read More »
Reflections from the Heritable Aortic Disorders Symposium 2023 In the realm of medical conferences, few experiences are as profound and transformative as attending an event that brings together patients, medical
Empowering Connections Read More »
Exploring Connective Tissue Disorders and Spinal Manifestations In a significant leap towards advancing medical understanding and patient care, the Loeys-Dietz Syndrome Foundation Canada, in collaboration with the Canadian Paediatric Spine
Canadian Paediatric Spine Society Symposium Read More »
Individuals with rare diseases often find themselves navigating uncharted territory, as there may be limited knowledge about their condition. In such circumstances, peer support groups offer a lifeline, providing a community of individuals who share similar experiences and can offer valuable support.
Peer Support Groups Read More »
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
What does Loeys-Dietz Syndrome Look Like? Read More »
By: Lauren Founder of Higgy Bears Hi! My name is Lauren, and I am the founder of Higgy Bears, a nonprofit organization based in the US. I make special
Higgy Bears: For Kids & Teens with Scoliosis Read More »
Caroline Bell has been living with idiopathic scoliosis since she was a teenager. Now an adult with a spinal fusion, she is starting to tell her scoliosis story. Today, she
Living with Idiopathic Scoliosis Read More »
8 min. read Transitions in medical care can be common for individuals and families living with Loeys-Dietz syndrome (LDS) or other complex or chronic conditions. Transitions may include changes in
How to Transition from Pediatric to Adult Care with Loeys-Dietz Syndrome Read More »
6 min. read How can students and families with Loeys-Dietz syndrome (LDS) prepare for school? What should educators know about students with LDS? As the school year approaches, LDS families
School and Loeys-Dietz Syndrome: Guidance for Families, Educators, and Students Read More »
