Editor’s Choice: The Songs and Stories of the Rare Disease Community
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…
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 Neuroscience News, the case of a woman with neck dystonia who was using a deep brain stimulation device called an implantable pulse generator (IPG) indicates…
According to a story from The Independent, an NHS trust has issued a recall for around 2,500 patients after concerns were raised about the treatment they were receiving from senior…
According to a story from news-medical.net, medical researchers have discovered that the gene called ari-1 can increase the risk aortic aneurysms. Previously, the precise genetic risk factors were not understood,…
According to a story from edinburghnews.com, mother Karen Gray is about to seek access to cannabidiol oil for her five-year-old son, Murray, who has a rare type of epilepsy, Myoclonic Astatic…
According to a story from the National Center for Advancing Translational Sciences, a group of scientists from the National Institutes of Health (NIH) has unearthed a new mechanism that could…
According to a story from asianscientist.com, a group of Japanese researchers have managed to unearth a genetic mutation that is associated with progressive supranuclear palsy. The discovery is helping scientists…
According to a story from Central Texas News Now, a four-year-old girl with an extremely rare form of mitochondrial disease got her wish to see snow. The girl, Scarlett Landry,…