According to a story from ALS News Today, the nation of Sweden is starting to emerge as a leader for amyotrophic lateral sclerosis (ALS) research in Europe. This is mostly…
Galactosemia Galactosemia is a rare disease which affects the metabolic system. It causes the body to not be able to process galactose properly. Galactose is a simple sugar present in…
There have been many defining factors throughout the past decade, especially in the healthcare industry. These changes, both good and bad, have defined this industry. From the opioid epidemic…
According to a story from Pulmonary Hypertension News, the results of a recent mouse study has produced some remarkable results. The study found that melatonin, a naturally occurring hormone in…
When Jessica Karnes was a kid, she was told she was no longer allowed to eat chicken nuggets. As a self-proclaimed lifelong picky eater—and a four-and-a-half-year-old at the time—this was a…
Oliver Sacks is beloved for his best-selling books that detail case studies of rare neurological disorders. Sacks created a niche when he combined his work as a neurologist with whimsical…
Since April 2019, I have been actively seeking out adults (18+) who are willing to publicly share their stories about their lives with rare and chronic diseases. I feel it…
According to a story from BioSpace, the US Food and Drug Administration (FDA) has recently approved avapritinib (marketed as AYVAKIT) as a treatment for gastrointestinal stromal tumors in cases when…
According to an article from the JAMA Network, the role of the human microbiome in our health is just beginning to be understood, and the manipulation of the human gut…
According to a story from euronews.com, the drug maker Novartis has announced that it will give away its breakthrough spinal muscular atrophy gene therapy drug Zolgensma to 100 patients each…
Happy Thursday! We're back with a batch of new article! This week, we have another article from PW contributor, Tom Seaman, who uses his experience with dystonia to help people…
AI Therapeutics is a biopharmaceutical company that has created an artificial intelligence platform that is meant to match drugs to new indications. This platform, called Guardian Angel, has matched…
According to a story from BioSpace, the biopharmaceutical company Apellis Pharmaceuticals, Inc., has recently announced the results of its phase 3 clinical trial, which was testing the company's investigational drug…
Gene therapy has become a technological golden snitch: the end of an era for many genetic disorders if we can grasp the treatment’s potential. However, the technology comes with a…
According to a story from News Amed, Rob Burrow gained fame as a star player for the Leeds Rhinos, a professional rugby team. After a distinguished career, Rob retired from…
January 24th is Moebius Syndrome Awareness Day! Let's take a deeper dive into what Moebius Syndrome is and what we can do to push awareness on this day (and all…
One of our partners, the MDS Foundation, Inc, is sponsoring another free MDS Patient & Family/Caregiver Forum. This event will be held in Birmingham, Alabama When: Saturday, February 1, 2020…
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According to a recent article in Yahoo News, Johan’s mother’s seven-year-old brother died years ago of chronic granulomatous disease (CGD). The mother, Maren, was told that she also had…
As originally reported in Quest Qunam and Sure Scripts; for manydiseases, time is of the essence in terms of treatment. The patient's health will deteriorate irreversibly thout treatment. However, with…
ALS is a progressive disease that causes the loss of muscle function, and it often develops very quickly after a diagnosis. Rami Epstein, the CEO of the biopharmaceutical company called…
Schizophrenia patients in the United States now have a new treatment option. Intra-Cellular Therapies has just announced that their investigative therapy called CAPLYTA has received FDA approval for adult schizophrenia…
According to a story from outsourcing-pharma.com, the US Food and Drug Administration (FDA) has recently started a new initiative with the opening of its Compounding Quality Center of Excellence. Janet…
According to a story from Medgadget, a team of scientists from Columbia University have been working on a robotic device that could assist patients with spinal cord injuries and impairments…
January is Cervical Health Awareness Month! The New Year holiday is all about taking stock of one's self and making efforts to improve or set goals for a better you.…
Doctor Daniel Kastner, director of NHGRI, recently uncovered a new rare disease along with his research team. It’s called CRIA syndrome. This discovery has been published in Nature. CRIA CRIA…
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