Scares That Care Scares That Care is a 501(c)(3) organization, first established in 2007 by Joe Ripple, dedicated to fighting the "monsters" of childhood illnesses, breast cancer, and burns. They support…
The EveryLife Foundation has initiated a scholarship fund to help those with rare conditions pursue their academic dreams. These will be one-time awards of 5,000 dollars. Up to 32 patients will…
According to a story from Charcot-Marie-Tooth News, a new nonprofit organization called Shark Tooth Cycling has recently begun operations. The mission of the organization is to encourage young people in…
When the team at Freiburg University discovered the domain of the T-cell receptor they were surprised that the newly-coined “RK motif” had never been identified. According to a recent…
According to a story from Globe Newswire, the biopharmaceutical company Ovid Therapeutics and the University of Connecticut School of Medicine (UConn) have announced a new license agreement and research collaboration…
Happy Friday! July is almost over, which means that Juvenile Idiopathic Arthritis Awareness Month is drawing to a close. But it's not too late to bring attention to this often…
According to a story from waff.com, Juliana Goode was first diagnosed with Cushing's disease in September 2018. It was an unusual case as Juliana is a teenager and the illness…
According to a recent article in the Myasthenia Gravis News, a team of doctors in Japan had been treating a man now aged sixty for multiple myeloma (MM). The…
According to a story from ahusnews.com, traveling with atypical hemolytic uremic syndrome (aHUS) takes some extra preparation and planning ahead. This syndrome can affect multiple organ systems and especially the…
According to a story from Myasthenia Gravis News, a recent case report describes a unique case of a 60 year old male multiple myeloma patient. After receiving treatment for the…
In a study published in BMC Pediatrics, researchers have found atypical hemolytic uremic syndrome (aHUS) and autoimmune thyroid disease may not only be a relatively common pair of rare diseases…
Experimental and innovative new technologies play a crucial role in advancing the medical sphere. Although nanomedicine is uniquely poised to treat diseases through nanotechnology, it typically comes with a…
According to a story from msn.com, two women who were impacted by the rare disease familial chylomicronemia syndrome (FCS) have lead the charge in changing the procedures used by the…
According to a story from BioSpace, the biopharmaceutical company Bioniz Therapeutics, Inc., has recently announced the release of interim results from its phase 1/2 clinical trial. This trial is investigating…
A study conducted by researchers from the Institute of Cancer Research in London and Cyclacel has recently been published in PLOS ONE. This investigation examined fadraciclib as a potential therapy…
If you're part of the rare disease community, then you probably are not a stranger to explaining your condition to others. But think about it. Has this ever been…
A recent article in Cure Today describes the impact of a new class of injectable radiation therapy on Barbara Davis’ metastatic breast cancer and Dr. Howard Schiff’s metastatic prostate…
In a recent press release, Knopp Biosciences announced that their drug therapy KB-3061 was granted Rare Pediatric Disease Designation to treat patients with KCNQ2 epileptic encephalopathy (KCNQ2-EE), a rare…
For twenty-five years Women of Influence has focused on empowering and helping to advance women in the workforce. Maayan Ziv, a Canadian tech entrepreneur, disability advocate, and voted one…
A duodenoscope is a device used in endoscopic retrograde cholangiopancreatography (ERCP) procedures, in which a doctor uses them to see the top of the small intestine. For a long time,…
Results of a Phase III study of CC-486 (oral form of azacitidine) showed a significant improvement for older patients who had been transfusion dependent. The results were favorable when…
Khevin Barnes is a cancer survivor, as he won his battle with breast cancer. While less than one percent of breast cancer diagnoses are males, it is very important to…
At the start of 2020, we had no idea what this year would bring: COVID-19, a novel coronavirus declared a pandemic in March. As of the morning of July 17,…
This past week, biopharmaceutical company Kiniksa Pharmaceuticals announced that their drug, rilonacept, received Orphan Drug Designation from the FDA. Following positive data from the RHAPSODY Phase 3 clinical trial,…
According to the American Cancer Society, there are approximately 1.7 million people in the U.S. diagnosed with cancer each year. About forty percent of these cases may be eligible…
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