April is recognized as Fabry Disease Awareness Month by the Fabry community in the US and several other countries around the world. Advocacy groups such as the Fabry Support &…
For the last month, the world has been living through a pandemic: COVID-19. The situation is rapidly changing daily. As of April 13, there have been 1.8 million diagnosed…
Want to learn more about recognizing symptoms and diagnosing patients? In a MedPage article, authors encourage readers to follow along on a case study to understand why a 58-year-old…
According to a story from koco.com, the community of Ada, Oklahoma, recently held a birthday celebration for a local affected by Alexander disease. Hunter Goodwin recently turned 18 years old,…
You've most likely heard of COVID-19. Although the numbers seem to constantly be growing, the current amount of diagnoses sits at just about 2.1 million people. In many articles, you'll…
As originally shared in Tech Startups, an Israeli biotech company called Pluristem has created a placenta-based cell therapy to treat patients with COVID-19. So far, the therapy, which uses PLacental…
According to a story from PR Newswire, the National Organization for Rare Disorders (NORD) has just recently kicked off a COVID-19 Critical Relief Program. In alignment with its mission to…
The ongoing coronavirus/COVID-19 pandemic has caused widespread uncertainty across the globe, and a lot of us have questions about what to do or what to expect. The rare disease community…
Uncertain times may be the understatement of the year so far. When the news of COVID-19 (coronavirus) caught our attention, there were a lot of people frozen in disbelief and…
As reported in CCAKids Blog, 2020's contagion has imposed a strange new set of rules and precautions for leaving the house. The latest CDC recommendation has told all of America…
According to CNBC, there is a shortage across the country of a very important medication: hydroxychloroquine. This is somewhat unsurprising. After all, the Trump administration has been vocal about the…
According to Business Insider, cases of COVID-19 and deaths attributed to it are rising rapidly. The pandemic was officially declared on March 10th, just about one month ago. At the…
Seneca Biopharma, Germantown, Md., issued a press release announcing its recent meeting with the FDA to discuss elements of a final design and protocol for a Phase 3 trial investigating…
According to a story from Porphyria News, Lucia Monaco, PhD, is the chair of the International Rare Diseases Research Consortium (IRDiRC). Despite the ongoing disruptions caused by the coronavirus/COVID-19 pandemic,…
According to a story from Spectrum News, the Andrews family has been dealing with a rare disease called Niemann-Pick disease type C for years. Parents Pam and Chris knew early…
According to an article in The Asahi Shimbun, Japanese scientists have developed a new vaccine to mitigate neuronal degeneration caused by Alzheimer's disease. The vaccine, delivered nasally, had promising results…
Hi everyone, We hope everyone's doing okay-- whatever that means for you right now. Today we have an article about how rationing systems during COVID-19 pandemic is affecting people who…
According to a report by ABC News, Virtua Health, one of the largest healthcare providers in New Jersey, claimed to have a forty-year history of organ transplant completions. Nonetheless, a…
According to an article in Science Daily, Professor David Nicewicz and a team of researchers at the UNC Department of Chemistry, discovered a method of creating tracers used in…
According to Oren Goldshtein, CEO of Vectorious Medical Technologies, remote patient monitoring is needed now more important than ever. Nobody knows how long the COVID-19 pandemic will last or…
A person with diabetes is not able to properly make or use insulin well. Advancements in science are now seriously looking at updating and perfecting ways to help people…
A press release from the US Food and Drug Administration (FDA) recently announced the approval of the drug selumetinib (marketed as Koselugo) for the treatment of patients aged two years…
NICHD The NICHD is the The Eunice Kennedy Shriver National Institute of Child Health and Human Development, one of the National Institutes of Health (NIH). It is the center for…
According to a story from XTalks, pulling off a clinical trial testing a new drug in a scientifically rigorous manner is no simple feat. It requires the triangulation of a…
According to a press release from the Mayo Clinic, new research findings show that in-utero neurological surgery for patients with spina bifida is more successful in strengthening brain structure…
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