I like to say that my brother has an addictive personality. I introduced him to George R. R. Martin’s A Song of Ice and Fire series, and he read the four…
Tuberous sclerosis complex (TSC) is a rare genetic disease. It causes tissue to form abnormally in patients at a young age. Different organs are affected by it, meaning that symptoms…
Earlier this week, you may not have seen our reporting on the latest move by China for the rare community. So in case you missed it... With the largest population…
The goal has always been to better manage and get a diagnosis earlier for inflammatory bowel diseases like ulcerative colitis and Crohn’s disease. The newest study at the University of…
Evidation Health’s goal is to make it easier for you to share your symptoms with the professionals who most need to know. Their program, in partnership with others, enables patients…
Bethany Barber is a Virginia native living with sickle cell anemia who has dreams of making it big as a model. She goes on daily castings, as modeling is her main…
Not many people can say they’ve dedicated their life to curing the disease that could lead to their death, but David Fajgenbaum certainly can. In a fascinating Science Magazine article, David…
Focal Segmental Glomerulosclerosis (FSGS)What is FSGS?Focal segmental glomerulosclerosis (FSGS) is a disease where scar tissue forms on areas of the kidneys that filter waste from the blood, which is called…
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.
