Written By Joslyn Crowe Caring for someone with a rare disease, especially a child or a family member, can be a difficult and emotional experience. Many people become a caregiver…
Silmitasertib, an investigative therapy for biliary tract cancer (BTC), has been awarded Orphan Drug Designation by the FDA. Researchers and the regulatory agency are hopeful that this therapy could become…
Welcome to Study of the Week from Patient Worthy. In this segment, we select a study we posted about from the previous week that we think is of particular interest…
According to a recent article, the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) is now recommending changing the marketing authorization for avapritinib, which is used…
The 300 million people living with rare diseases seldom receive appropriate medical treatment. Unlike common chronic diseases for which there are established and constantly evolving treatments and interventions, those with…
Judy was diagnosed at age 45 with the rare disease IgA nephropathy in 2019. The diagnosis changed her life forever. IgA nephropathy is difficult to diagnose until it has progressed,…
A popular book by Dr. Seuss that is often given to graduates is Oh The Places You'll Go. Now, suppose Dr. Seuss had entered the rare disease world. Perhaps he…
Written by Matt Horsnell, Community Manager, TREND Community TREND Community is a leader in evidence acceleration through social data exploration for rare and chronic illnesses. Patient Worthy is at the forefront…
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.
