Cure GM1 Foundation is hosting a family meeting filled with hope on Friday, September 20th! This gathering will be focused on community, clinical development and research updates, patient advocacy, and…
According to a story from Financial Buzz, the Steadman Philippon Research Institute (SPRI) recently received an award in research from the National Institutes of Health (NIH). The award is in…
According to a story from Mizzou News, Chris Lorson, who is the associate dean for Research and Graduate Studies at the school's College of Veterinary Medicine, recently earned four grants…
According to a publication from BioPortfolio, American biotechnology companies Akcea Therapeutics and Ionis Pharmaceuticals recently published final study results from their phase 3 clinical study of Waylivra (generic name volanesorsen)…
Families in England affected by Batten disease are struggling to access effective treatments in their home country. Nicole and Jessica Rich are two young girls who live with their families…
According to a story from Cancer Research UK, a combination treatment featuring the targeted cancer therapy venetoclax (marketed as Venclyxto) and the monoclonal antibody rituximab will soon be covered by…
TGIF! Something we believe is that the stories of rare disease patients are vitally important. This week, we're highlighting two articles written by patients, as well as a story about…
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.
