It's no secret that, over the last 1.5-2 years, COVID-19 has played a huge role in all of our lives. The novel SARS-CoV-2 coronavirus is present in over 200…
Francis Collins, M.D. is the director of the NIH which is involved with a national study of long COVID. According to a report by Alaska Public Media, the NIH has…
Sometimes, it can be difficult to spur drug development for rare or life-threatening diseases, considering the number of patients. To address this, and improve patient outcomes, the FDA developed the…
September will soon come to a close, but did you know that this month is also Ovarian Cancer Awareness Month? According to a story from MSN, Michelle Barrenechea, an EMT…
Have you ever had a panic attack? If so, you know how terrifying they can be. I have had plenty and know exactly what they are like…torture! There is good…
On September 21, 2021, Rare Disease Legislative Advocates (RDLA) hosted its monthly webinar. The focus of this webinar was newborn screening in recognition of Newborn Screening Awareness Month, which is…
According to a story from MSN, Busola Omiyale's daughter Toriayooluwa was only nine months old when she could tell that something wasn't right. The girl had sickle cell disease, a…
Funding is a problem that many rare diseases face when it comes to research. Cholangiocarcinoma, also known as bile duct cancer, is no exception. Because of this, it is often…
Unfortunately, clinical trials do not always proceed the way that drug developers - and patients - hope. For example, an ongoing Phase 1/2 clinical trial evaluating BMN 307, an investigational…
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