Tom Kean, the Senate Republican Majority Leader in New Jersey, is leading the charge to fully realize a recently partially approved bill, which would create a New Jersey Rare Disease…
According to Epidermolysis Bullosa News, staph infections are increasingly common in the wounds or blisters of patients with epidermolysis bullosa (EB). In fact, an analysis of these lesions showed that most had…
Sometimes it's hard to know why you're not sleeping well. Is it because you're nervous for tomorrow’s meeting, or from that impulsive 2PM cup of coffee? For people with Parkinson’s,…
In early February, global biopharmaceutical company Sanofi and biotechnology company Regeneron Pharmaceuticals, Inc. ("Regeneron") shared that its dually developed drug Libtayo (cemiplimab-rwlc) recently received FDA approval. Now, Libtayo stands as…
Biotech company Ovid has released disappointing results from a trial of OV101, a potential treatment for Angelman's syndrome. The Phase 3 trial demonstrated that there was no significant difference in…
Recent research has discovered a new, potential treatment option that could provide an early intervention for Beckwith-Wiedmann syndrome and Russell-Silver syndrome. Published in Cell Reports, this study could provide the…
Recently, biopharmaceutical company GenSight Biologics ("GenSight") announced the publication of data from a study evaluating GS030-Drug Products (GS030-DP or "GS030") as a potential treatment option for retinitis pigmentosa (RP). Although…
Genetic testing is being used more frequently to screen people for the hereditary risk of cancer, according to MedCity News. While advancements have been made and research is ongoing, there…
There are many forms of birth control available: oral contraceptives (birth control pills), intrauterine devices (IUDs), the implant or patch, condoms. But according to Cancer Therapy Advisor, a new study…
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.
