The first ever rare disease film festival took place the first week of October in Massachusetts! Founded by rare disease parents Bo Bigelow (USP7 mutation) and Daniel DeFabio (Menkes Disease),…
Some breathtaking things are happening in the world of sickle cell anemia (SCA) that could potentially impact the lives of nearly 275,000 babies around the world and nearly 100,000 African…
Brock Chadwick is a Halloween enthusiast and his love for all things spooky has shot around the world. Brock's parents asked strangers to send him Halloween greeting cards in order…
How far would you go to eradicate a disease that impacts millions of lives? Would you cross the ethical line if it meant ending a source of suffering forever? Or…
Suffering alone with a rare, chronic condition is a terrible thing. But thanks to the National Porphyria Registry people living with this vexing disease have a way to stand up,…
Phoenix Richey was living a happy and healthy life until things escalated toward the unexpected. During a tumultuous 24 hour period, a strange allergic reaction spread along 65 percent of…
The clock is ticking. If you or someone you love is diagnosed with a rare disease like hypoplasminogenemia, days -- often even hours -- can mean the difference between life…
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.
