Behcet’s Awareness Day is May 20th! Behcet’s disease (also known as Behçet’s and Behçet’s syndrome) is a rare condition that causes chronic inflammation which manifests as ulcers (commonly referred to…
I was diagnosed with benign essential blepharospasm at the end of 2015. This is a neurological condition which causes the muscles around my eyes to contract, resulting in uncontrollable blinking…
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China’s attempt to stem the tide of drug addiction through brain surgery has been problematic. Yet a recent article in the Himalayan Times reports that six of the eight…
Phage Therapy Phages, or bacteriophages, are the natural enemy of viruses. They are the most abundant organisms in the biosphere. Researchers have used phages as treatments before, however after the…
According to a publication from the State University of New York at Buffalo, most symptoms of proximal renal tubular acidosis do not stem from the acidic blood levels that characterize…
According to a story from BioSpace, a Phase 1/2 clinical trial testing SGT-001, an investigational treatment for Duchenne muscular dystrophy, has been plagued by problems with side effects and adverse…
According to a story from globenewswire.com, the biopharmaceutical company Abeona Therapeutics, Inc. recently issued an announcement in regards to the company's Phase 1/2 clinical trial, which is testing the company's…
According to a publication from ANCA Vasculitis News, a new study in International Kidney Reports suggests that stopping treatment of the disease once it goes into remission may lead to…
The Growth of Precision Medicine Precision medicine is the idea that each patient is an individual, and therefore deserves an individualized treatment plan to secure the best outcomes. It is…
According to a story from Genome Web, a team of researchers from across the country have concluded an in-depth genetic analysis focused on the origins of Hirschsprung's disease, a rare…
May is Myositis Awareness Month! Myositis is the inflammation or swelling of the muscles. There are two primary kinds of myositis: Polymyositis, which causes muscle weakness, usually in the muscles closest…
Thursday May 16th is HAE Day, when we observes the hopes, struggles, and resilience of the Hereditary Angioedema (HAE) patient community! What is HAE? “Angio” means pertaining to blood vessels, and…
According to a story from globenewswire.com, the biopharmaceutical company Poseida Therapeutics, Inc. recently announced that the company's investigational product candidate P-BCMA-101 has been granted Orphan Drug Designation from the US…
Happy Wednesday! We're officially halfway through May if you can believe it! This week we're highlighting a piece about an intern using their rare experience to inform their work, followed…
According to a story from KUT News, Ava Shepperd and John Ben Shepperd, aged 14 and 18 respectively, always knew that they would eventually need to get kidney transplants. This…
The FDA has just recently approved CYRAMZA as a treatment for those with hepatocellular carcinoma (HCC), who have been treated with sorafenib, and who have ≥400 ng/mL of alpha-fetoprotein (AFP).…
According to a story from mirror.co.uk, Professor Selim Cellek is leading a clinical trial that will test a drug combination designed to treat erectile dysfunction associated with Peyronie's disease, a…
May is Cystinosis Awareness Month! During the month (and all year long!) we strive to bring together the cystinosis patient community and their families -- and the Cystinosis Research Network's…
According to a story from F3News, 77 year old Ron Davis has lived a life highlighted by incredible scientific achievement. He leads the lab that played a critical role in…
According to a story from apnews.com, the drug developer Ayala Pharmaceuticals has recently announced that the company's investigational product candidate, known as as AL101, has earned Orphan Drug Designation. This…
According to a story from Palomar Health, a patient with Hunter syndrome is about to finish up the company's Pathmaker Internship program. The patient in question is Kyle Underwood, who…
Confusion, nausea, fever, anger, then back to normal: this was Lauren Vandiver’s life beginning in early childhood. Her parents, Phillip and Angela Vandiver, spent more than twenty years asking the…
A story from findmecure.com describes several of the latest developments in the area of myasthenia gravis treatment that patients should be aware of. The field of rare disease treatment is…
According to the Wall Street Journal, the National Institutes of Health (NIH) has reversed its initial decision to prevent two of its researchers from meeting with federal investigators to comment…
H.R. 2408 H.R. 2408 is a new piece of federal legislation otherwise known as the "Ensuring Access to Quality Complex Rehabilitation Technology Act." Essentially, this act creates a new category…
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