According to a story from Medscape, a recent study is highlighting the fact that many thyroid cancer survivors are still worried about cancer-related problems years after the conclusion of treatment.…
According to a story from Newswise, Holly Becker was only 24 years old when she was first diagnosed with non-Hodgkin lymphoma. However, her life was saved with a stem cell…
Recently, a well-paid celebrity, being afraid that her daughter wouldn't be accepted by the college of her choice, paid a "fixer" to help the girl by cheating on the results…
According to a story from the Warwick Beacon, the first ever primary immunodeficiency (PI) awareness and fundraising walk in Rhode Island's history was held recently at Warwick City Park. The…
Genes themselves are a relatively new discovery, found only about a century ago. Gene therapy, a medical procedure that alters genes to address disease, is in its first 30 years.…
As reported in 17 Magazine, at 17, Billie Eilish has rapidly become a huge celebrity with her life catapulted into the public eye. Part of being famous in 2019 means…
Patient Worthy has written extensively about Dr. David Fajgenbaum, who has made it his life's mission to find a cure for Castleman Disease. Dr. Fajgenbaum is not only diagnosed with…
Thirty-five percent of all Americans and almost 25% of the entire world population may be unknowingly suffering from a "silent killer." Nonalcoholic fatty liver disease or NAFLD is occurs…
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Why would someone compare genetic editing to weapons of mass destruction? Perhaps one answer can be found in the automobile. The family automobile was certainly not designed as a weapon…
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…
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