In a press release, the independent specialty pharmacy Biologics by McKesson recently announced that it has been selected to the be the sole provider of fosdenopterin (marketed as NULIBRY) by…
The Johnson & Johnson (J&J) vaccine was welcomed as the third alternative to Moderna and Pfizer vaccines but with even more perks. It was a one-time shot that used “viral…
FibroGen has just announced that their investigative therapy pamrevlumab, for Duchenne muscular dystrophy (DMD), has received Rare Pediatric Disease designation from the FDA. The treatment already was given Fast Track…
In a recent press release, RNA-targeted therapeutics company Ionis Pharmaceuticals, Inc. ("Ionis") shared the initiation of a Phase 2/3 clinical trial evaluating ION373 for patients with Alexander disease (AxD). Currently,…
The International Fibrodysplasia Ossificans Progressiva Association (IFOPA) is gearing up to recognize International FOP Awareness Day this year on April 23, 2021. The event is meant to help spread awareness…
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 previous article, I talked about the importance of patient-led advocacy groups and how they can positively impact how a rare diagnosis is received and understood by patients. Do…
According to a recent news release, the FDA cleared an Investigational New Drug (IND) application for VIP152, a potential therapeutic option for patients with Richter syndrome and relapsed/refractory chronic…
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