According to a story from Charcot-Marie-Tooth News, a recent study has revealed that patients with Charcot-Marie-Tooth disease (CMT) type 1A still display signs of muscle weakness even if they retain…
According to a story from Medgadget, a team of researchers associated with Yale University have discovered that the symptoms of Tourette's syndrome can be controlled through the use of functional…
Cure GM1 Foundation is hosting a family meeting filled with hope on Friday, September 20th! This gathering will be focused on community, clinical development and research updates, patient advocacy, and…
According to a story from Financial Buzz, the Steadman Philippon Research Institute (SPRI) recently received an award in research from the National Institutes of Health (NIH). The award is in…
According to a story from Mizzou News, Chris Lorson, who is the associate dean for Research and Graduate Studies at the school's College of Veterinary Medicine, recently earned four grants…
According to a publication from BioPortfolio, American biotechnology companies Akcea Therapeutics and Ionis Pharmaceuticals recently published final study results from their phase 3 clinical study of Waylivra (generic name volanesorsen)…
Families in England affected by Batten disease are struggling to access effective treatments in their home country. Nicole and Jessica Rich are two young girls who live with their families…
According to a story from Cancer Research UK, a combination treatment featuring the targeted cancer therapy venetoclax (marketed as Venclyxto) and the monoclonal antibody rituximab will soon be covered by…
TGIF! Something we believe is that the stories of rare disease patients are vitally important. This week, we're highlighting two articles written by patients, as well as a story about…
The day that changed who I am was a typical Saturday morning at the lake, mowing the lawn. May 4, 2013 was a day I just plain forgot. Well, I…
You take care of your skin to make it look flawless and healthy. Despite such efforts, your skin can catch disease without you being aware of it. One such disease…
According to a story from news-medical.net, a recent study is giving scientists new insights into the nature of Merkel cell carcinoma, a rare cancer that affects the skin. The study…
According to a story from Market Watch, the biotechnology company Vertex Pharmaceuticals, Inc. has announced recently that the US Food and Drug Administration (FDA) has accepted the company's New Drug…
According to a story from PR Newswire, the biopharmaceutical company Harmony Biosciences, LLC recently announced that the US Food and Drug Administration (FDA) has approved the company's drug pitolisant (marketed…
According to a story from Comic Sands, mother Alison Beesley is now committed to taking care of her daughters Eliza and Eleanor full time. Eliza is nine years old and…
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A recent article published in Curetoday highlights not only the many new and successful therapies available to cancer patients but it also illustrates how patients can connect to other…
Sumaira Foundation Sumaira Ahmed established the Sumaira Foundation so that fewer rare disease patients would have to face the experience by themselves. Sumaira Ahmed is diagnosed with neuromyelitis optica spectrum disorder…
Here's a shocking fact for you- individuals don't always conform to averages. Despite this, we use averages as an analysis for so many things. As it documents the majority, its…
Scientists have discovered an immune suppressing cell to combat symptoms of multiple sclerosis. In a new study on mice, researchers have discovered a cell that can possibly be used to…
According to a story from Medical Xpress, a recent study has determined that the onset of Huntington's disease symptoms is triggered by genetic instability in a specific sequence of DNA…
According to a story from Medpage Today, a recent, small scale, early study of patients with local but advanced pancreatic cancer revealed that an experimental combination treatment comprised of chemoradiation…
According to a story from Oklahoma's Nursing Times, Chrissy Brady was surprised one day when she began to lose feeling in her left leg. Then, for the next month, she…
Have you ever been judged by others for the things you do or the way you live your life? I know this is a rhetorical question because we have all…
According to a story from Angioedema News, the drug development company Regenxbio has announced that it is in the process of developing a new gene therapy treatment for hereditary angioedema,…
According to a story from Scleroderma News, a recent study has recommended that scleroderma patients with a rare, poorly understood form of interstitial lung disease (ILD) should receive regular monitoring…
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