The Timothy Syndrome Alliance (TSA) has just announced that they will be collaborating with Pulse Infoframe to create a patient registry. This registry will increase our understanding of the CACNA1C…
Adverse events (AEs) are unexpected medical issues that arise upon treatment. Now, this is a very broad term, and it can be broken down into more specific categories depending on…
In a Phase 3 clinical trial, researchers evaluated I/ONTAK (also known as E7777) as a potential therapeutic option for persistent or recurrent cutaneous T-cell lymphoma (CTCL). According to Targeted Oncology,…
CureDuchenne is one of Patient Worthy's partner organizations. Patient Worthy partners with a variety of rare disease and patient-oriented non-profits in order to collaborate and help promote one another's activities.…
The American Academy of Neurology (AAN) 2022 Annual Meeting is held from April 2nd until the 7th in Seattle, with its virtual counterpart happening on April 24th to the 26th.…
When news of a bacterial meningitis outbreak spreads, you may hear the phrase "cluster." When referencing a small cluster, it refers to a smaller group of people, often in a…
According to a story from Rolling Stone, iconic comedian Gilbert Gottfried has passed away from complications related to myotonic dystrophy type II, a rare disease. His publicist disclosed his cause…
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.
