Thanks to a local physician’s group in Baton Rouge, patients with amyotrophic lateral sclerosis (ALS) no longer face lengthy drives to receive treatment. The clinic serving the Baton Rouge area…
According to a story from raredr.com, The U.S. Food and Drug Administration (FDA) has recently approved Hizentra as a maintenance therapy for patients with chronic inflammatory demyelinating polyneuropathy. Hizentra is…
In a previous article we discussed what the Right to Try bill is, and what it’s current status was in the US Congress. It recently failed to pass in the…
According to BelfastLive, Darren and Danielle Gibson, the parents of little six-year-old Sophia battling Dravet syndrome, traveled out of the country in search of the care she needs. For the…
According to a story from LiveScience, nine dentists and dental workers in the state of Virginia have been diagnosed with idiopathic pulmonary fibrosis, a rare and dangerous lung disease. All…
Spinal muscular atrophy is both rare and deadly. It’s uncommon enough that most people never worry about it-- but the consequences that happen if it goes undetected are devastating. That’s…
Happy St. Paddy's everybody! While most people are putting on their green clothing to celebrate the holiday, some communities of rare patients have other exciting happenings in mind. This week,…
According to a story from 13abc.com, a family is working to spread awareness about Batten disease after second grader, Charles Klein was diagnosed with the condition. The disease has no…
Shannon Hudson, mother from Columbus, is doing everything in her power to bring awareness to Glutaric Aciduria/Acidemia type 1, a rare disease her daughter was diagnosed with upon birth,…
According to a story from The Independent, Britain's disability welfare program is coming under fire for its Personal Independent Payment (PIP) assessments. Statistical measures suggest that these assessments are taking…
While it seems to be common knowledge that drinking while pregnant is unwise, many children are harmed by the effects of fetal alcohol spectrum disorder, reported CNN. Older studies suggest…
Ben Mudge might closely resemble Chris Hemsworth's Thor with his good looks and shredded physique, but he's also a real life superhero to many, reports Business Insider. Ben has defied…
According to a story from Charcot-Marie-Tooth Disease News, the U.S. Food and Drug Administration (FDA), under the leadership of commissioner Scott Gottlieb, has begun to change clinical trials by accepting…
When dealing with a rare disease, it's often hard to find someone else who's experiencing the same situation. Someone to talk with, cope with, listen to. Someone who gets it.…
According to a story from wired.com, Stephen Hawking, one of the most famous physicists on the planet, passed away on Wednesday, March 14th, 2018. He was 76 years old. His…
According to a story from All4Women, Nicole Capper, crowned Mrs. South Africa, is planning to summit Mt. Everest, the highest mountain peak on the planet, in order to help promote…
The BIOIMAGING 2018 Conference in Portugal recently announced it’s “Best Student Paper” award. The award went to a Nigerian doctoral student who identified a new technique for examining the retina.…
According to a story from markets.financialcontent.com, approximately 300 Parkinson's disease advocates and disease experts are slated to meet in Washington, DC for the Parkinson's Policy Forum. This year, the event…
On March 5th, Parent Project Muscular Dystrophy hosted a new kind of meeting at their annual conference. Parent Project Muscular Dystrophy (PPMD) held the meeting in Washington DC with a…
Cyclic Vomiting Syndrome is a rare and devastating condition causing intense nausea, and persistent vomiting. Many people are unaware of the disease, and many times it goes misdiagnosed or completely…
A new study by Northwestern scientists shares that patients with Huntington's disease are much less likely to develop cancer because the disease is toxic to cancer cells, recently reported by News…
According to a story from the Wall Street Journal, the U.S. healthcare system might be able to learn a thing or two from Netflix. A well understood aspect of healthcare…
CRISPR gene editing technology is still mostly in its infancy, but the new tool is already causing a lot of excitement, particularly in the treatment of genetically-linked diseases. A recent…
According to a story from PressReleasePoint, a new partnership has developed to generate artificial intelligence technology that will help diagnose people with a variety of rare diseases. The partnership consists…
According to a story from fiercebiotech.com, the gene therapy startup Generation Bio managed to fundraise $100 million in a little over a month. In its prior series A round of…
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