Blog
Empowering Connections
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 professionals, and researchers, all united by a shared mission. The Heritable Aortic Disorders (HAD) Symposium held in Halifax, Nova Scotia, on June 23-24, 2023, stands as a testament to the power of knowledge exchange and community building. This symposium, with its diverse range of attendees,
Canadian Paediatric Spine Society Symposium
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 Society, orchestrated a transformative event this March. The Connective Tissue Disorder & Spinal Manifestations Symposium brought together medical professionals, patients, and advocates to delve into the intricate relationship between connective tissue disorders and spinal manifestations. At the heart of the event was the esteemed orthopaedic
Peer Support Groups
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.
What does Loeys-Dietz Syndrome Look Like?
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 connective tissue disorders like Marfan syndrome and Ehlers-Danlos syndrome. What is Loeys-Dietz Syndrome? Loeys-Dietz syndrome (LDS) is a rare
Higgy Bears: For Kids & Teens with Scoliosis
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 teddy bears for kids and teens with scoliosis. I handmake mini back braces for the bears to wear for kids that are bracing. I also sew rods into their backs for patients, like me, that have had scoliosis surgery. They are a little friend where
Living with Idiopathic Scoliosis
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 shares the events leading up to her surgery, life beyond it, and both the visible and invisible scars of scoliosis. Her first book Tangled in the Curves comes out later this year and is a first-hand account of life with scoliosis as well as ways