Meet the Eaton family. Every since their son Vincent was born with Multiple Hereditary Extoses (MHE), they've united as a family to find ways to combat the rare disease. And…
As the world turns, so do advancements in gene therapy. Technology is changing our world so drastically that soon gene therapy will be simplified into a one-shot treatment. With it,…
National Drug and Alcohol Facts Week is the last week of January. American Heart Month is February. And October is the sentinel month for people with achondroplasia aka dwarfism. October…
Rebecca Wanosik was already a pro when it came to being a mom. Zedyn was her fifth child. She knew to trust her gut when, three weeks after her baby…
James Moran suffers with Stickler syndrome and with it, is writing a new play to get in touch with his humanity The Assassination of Pope Urban II is a piece…
Bruises. Ouchies. Boo Boos. Whatever you call them, injuries to the skin can happen anywhere on the body and can be caused by everything from vitamin deficiencies to a rare…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.