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…
According to a story from express.co.uk, the COVID-19 pandemic was a shock to the world when it first struck over two years ago, and while we have a better understanding…
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…
The Cure Mito Foundation, a Patient Worthy partner organization, and integrative Cardiovascular Metabolism and Pathophysiology Laboratory (iCaMP) at Boston University, are hosting a virtual conference titled "Empower and Inspire: Understanding…
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…
According to a story from Charcot-Marie-Tooth News, the Global CMT Research Convention is set to take place in Cambridge, Massachusetts on September 16-17, 2022. Organized by the CMT Research Foundation,…
According to a story from Market Watch, the drug companies Merch and Eisai recently announced an update on their phase 3 clinical trial. This clinical trial was evaluating a combination…
On July 27, 2022, the National Organization for Rare Disorders (NORD) hosted an online webinar titled "Drug Development for Rare Diseases: A Community Conversation." This program was designed to help…
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…
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…
The month of August is recognized as Stevens-Johnson Syndrome Awareness Month. The goal of this month is to elevate awareness about Stevens-Johnson syndrome among the general public and in the…
According to a story from Myasthenia Gravis News, the European Medicines Agency Committee for Medicinal Products for Human Use (CHMP) has recommended ravulizumab (marketed as Ultomiris) to be approved as…
According to a story from Ophthalmology Times, the COVID-19 pandemic rapidly expanded the usage of telemedicine, including virtual, tele-ophthalmology appointments. It also highlighted the effectiveness of AI, and both of…
According to a story from Rett Syndrome News, the pharmaceutical company Acadia Pharmaceuticals is seeking U.S. Food and Drug Administration (FDA) approval for its investigational therapy trofinetide. It has been…
On July 28, 2022, the Rare Disease Legislative Advocates (RDLA) hosted their monthly webinar for July. As always, these recurring meetings help provide critical updates to the rare disease community…
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…
When Caroline Cheung-Yiu's son Alex started to walk around age two, it was clear that he was struggling with his balance and coordination; but instead of improving, his issues started…
According to a story from ozarksfirst.com, Jamie Simoson was taken completely by surprise when her three year old son Jonathan started complaining about a headache. As his condition worsened, Jonathan…
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…
According to a story from Neuro Central, pharmaceutical company Merck has provided an update on its findings from its phase 3 clinical trial KEYNOTE-412. This clinical trial was evaluating pembrolizumab…
According to a story from Markets Insider, the drug company Kazia Therapeutics Limited recently announced that its investigational therapy paxalisib has been awarded Rare Pediatric Disease designation from the US…
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…
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…
According to a story from Medpage Today, patients using the drug azathioprine who carried a certain genotype were three times more likely to need to either cease treatment or reduce…
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…
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