This conference is available to children and adults affected by Marfan syndrome and their families. It will serve as an opportunity to meet other members of the Marfan syndrome…
The birth of a child can be one of the defining moments for a couple. It’s a milestone of that brings with it a series of surprises and lifestyle changes…
Advances in Rare Musculoskeletal Disorders Symposium This event will feature keynote addresses from internationally renowned musculoskeletal disorder experts, who will address subjects such as Marfan syndrome. The event will include…
According to a story from PR Newswire, The Marfan Foundation and Backpack Health are partnering so that the foundation can begin the creation of a patient registry for people affected…
Residents think of the Central Florida healthcare system as predictable. It maintains a conservative approach to practices. That was until recently, when the industry invited local video game developers to…
According to the New York Post, 16-year-old Brandon Marshall from the UK stands tall at a whopping 7' 4", possibly making him the tallest teen currently in the world. His…
You'd be excused if many (or even most) of you have never heard of this rare disease - which is why it's important to observe rare disease awareness months. Marfan…
Every single day is life-threatening for Lauren Stribling, a 15-year-old girl suffering from a rare genetic disease called Marfan syndrome, reported Daily Mail. A simple fall, push, or physical aggression…
A new study may lead to new cures and treatments for Marfan syndrome. Researchers at Johns Hopkins have made great progress testing in mice. Follow the original story here. On…
If you have a rare disease, chances are, sometimes you feel all alone in your experience. When you look around, there are people all over the world fighting similar battles.…
Some people with Marfan syndrome look the part. They may be unusually flexible, with long arms, legs, and fingers, and a tall, willowy build. Some patients have scoliosis, crowded teeth,…
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