According to a story from Angioedema News, a recent study has found that the drug icatibant (marketed as Firazyr) can safely treat older patients with hereditary angioedema, a rare condition…
According to a story from BioSpace, Janssen Pharmaceutical Companies recently announced that the European Commission (EC) has expanded the approved indication of the company's drug ustekinumab (marketed as Stelara). This…
According to a story from health.usnews.com, a flareup of symptoms can be a time of serious distress for patients with ulcerative colitis, which is a rare type of inflammatory bowel…
According to a story from newswise.com, the American Neuromuscular Foundation has recently awarded a grant to Dr. Karissa Gable. This grant will go towards a research project headed by Dr.…
According to a story from Angioedema News, the results of a recent study have led authors to conclude that genetic testing can be useful for the diagnosis of hereditary angioedema…
Of all possible symptoms, four year old Alex Vasey developed one that most people don't associate with disease. As originally reported in The Daily Record, Alex’s rare genetic condition, Williams…
According to a story from BioSpace, the genetic medicines company Passage Bio recently announced plans for its sixth program for gene therapy development. The company plans to work with the…
We're almost halfway through September believe it or not! As autumn approaches, we're continuing the aggregate rare disease news. This week, we're highlighting three studies, and one article on a…
One of our partner organizations, the MDS Foundation, is hosting another free MDS Patient & Family Forum in conjunction with Kansas University Medical Center, with support from Celgene, Novartis, Takeda,…
According to a story from journals.lww.com, The Lazarex Cancer Foundation and the University of California San Francisco have announced plans to work together on a three year study that will…
In the US, medical costs come in the form of drug prescriptions, doctors visits, expensive surgeries, and visits to specialists. As originally reported in The Tyee, in Canada, patients are…
According to a story from the Washington Post, the University of Virginia (UVA) Health System is often ranked as the best in the Old Dominion, but it also pursues debts…
According to a story from Columbia University, the country's All of Us Research Program is making consistent process in its ultimate goal to enroll a minimum of 1 million participants. These…
Rare diseases often lack a voice. Unlike more common diseases, they do not have big movements that bring the disease awareness through fundraisers, 5Ks, and spokespeople. However, sometimes, celebrities have…
According to a story from EurekAlert!, a team of scientists affiliated with the Harvard Medical School and the Joslin Diabetes Center recently published a study that is giving researchers the…
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Pharmacogenomics plays an important role in predicting whether patients will benefit from certain medications or if the medication will cause serious side effects. The process involves the way in…
It’s lonely when your child has an ultra-rare disease. There's not sufficient funding; there may not be a movement to rally behind, no community to share stories and struggles with.…
September is Tyrosinemia Awareness Month! The good people of the Network Of Tyrosinemia Advocates (N.O.T.A.) have organized a family weekend later this month aimed to bring the Tyrosinemia community together. Let's…
The Advisory Committee on Heritable Disorders is hosting a webinar on September 24, as part of its mission to reduce morbidity and mortality in newborns and children who have, or are…
According to a story from curetoday.com, the American Society of Clinical Oncology (ASCO) recently announced its 2018 Advance of the Year. For 2018, the organization chose to highlight progress that…
According to a story from biotech-now.org, the behavior of health insurance companies in the US is just one of the many problems that plagues our health system. While Americans pay…
According to a story from Benzinga, the biopharmaceutical company Inventiva has recently announced that it has recruited the first patients in a study of biomarkers in Maroteaux-Lamy syndrome. The study…
Wearable monitoring technology that tracks a persons movement, heartbeat, and bodily functions has become popular across society because it gives us a window into our bodies and to watch the…
According to a story from The Globe and Mail, Canada's Patented Medicine Prices Review Board announced last month that drug prices would be subject to new regulations. These new rules…
According to a publication from Charcot Marie Tooth News, biomedical law expert Timo Minssen recently gave a presentation at the New York Genome Center where he discussed the potential ethical…
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