TGIF, everybody! This week we're sharing music videos by a singer who raises awareness for aHUS, a journey of a dysautonomia patient, and a story about a man who was…
According to a story from inhomelandsecurity.com, military veterans are roughly twice as likely to get amyotrophic lateral sclerosis (ALS), a lethal degenerative disease that kills in as little as two…
May has been designated Behçet's disease awareness month - but unlike so many of the rare diseases we cover, there are not any advocacy organizations dedicated to raising awareness and support…
A new treatment for cystic fibrosis has received a lot of media attention in the UK after the National Health Service (NHS) chose not to fund it due to its…
According to a story from the Washington Post, an outbreak of Nipah virus has claimed a total of ten lives so far in south India. Medical teams are starting to…
According to a story from Medical Xpress, the drug adalimumab (marketed as Humira), did not have a noticeable effect on aortic inflammation in patients with psoriatic arthritis or psoriasis. Humira…
According to a story from Business Wire, the gene therapy company Myonexus Therapeutics announced that the U.S. FDA has given Rare Pediatric Disease Designation for its gene therapy candidate MYO-101.…
According to a story from Cardiovascular Business, The FH Foundation, which is a frontrunning patient advocacy and research organization for familial hypercholesterolemia, recently announced that it has begun enrollment for…
Primary biliary cholangitis (PBC) is a rare disease, but you don’t have to face it alone. Join us for an educational program and connect with others who understand what you’re going…
Researchers at Columbia University have found a way to apply CRISPR, a tool used in gene therapies, to new types of disease, reports News Medical. The study was carried out…
A new documentary, Unrest, explores myalgic encephalopathy (ME), also known as chronic fatigue syndrome. The film was premiered at the Sundance Film Festival 2017 where it received an award for…
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