Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…
On October 7th, 2021, Patient Worthy took part in RARESummit21, a virtual event organized by the Cambridge Rare Disease Network (CRDN). "...a flagship CRDN event gathering over 300 great minds…
Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most…
In a recent press release, biopharmaceutical company Rhythm Pharmaceuticals (“Rhythm”) announced positive data from a Phase 3 clinical trial. During the trial, Rhythm evaluated setmelanotide for patients with Bardet-Biedl syndrome…
According to a publication from EurekAlert, a clinical trial of setmelanotide, an experimental anti-obesity drug, is set to begin soon at the Alberta Diabetes Institute (of the University of Alberta).…
The Importance of Braille For any child with a rare disease that leads to blindness or visual impairment such as Stargardt disease, Usher Syndrome, Alström syndrome, or Retinal Blindness life…
At Patient Worthy, we are dedicated to the covering the latest stories about rare diseases that appear in the news cycle. While this is an important part of our mission…
According to a story from MarketWatch, the biopharmaceutical company Rhythm Pharmaceuticals, Inc., recently presented interim data from a Phase 2 trial of setmelanotide as a treatment for obesity associated with…
According to a story from uhb.nhs.uk, a recent study has drawn a link between chronic kidney disease and Alström syndrome. The research team is associated with the University Hospitals Birmingham…
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