The Global Genes RARE Patient Advocacy Summit This conference will be a convergence of a variety of rare disease stakeholders, such as rare disease patients, world renowned experts, and caregivers.…
According to a story from Duke Cancer Institute, Chantal Rose-Denman, age 44, has been a runner ever since she was a teenager. 17 years ago she made the switch to…
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 wearegreenbay.com, a team of scientists associated with the University of Wisconsin, Madison are undertaking a project that will help improve the effectiveness of research related…
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…
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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 dailypost.co.uk, it didn't take long for Catherine Kelly to determine that her three year old son had a brain tumor; in fact, she made the…
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 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…
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…
According to a story from Biotech 365, the biotechnology company Viela Bio announced the publication of critical results from a recent study that tested the company's investigational drug inebilizumab as…
According to a story from The Rheumatologist, evidence suggests that patients with rare diseases, such as autoimmune diseases, can benefit from visiting combined clinics, which are special medical centers in…
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 Forbes, a new drug developed by the company Regeneron has the potential to make a real difference for people with the homozygous form of familial…
According to a story from rheumatology.medicinematters.com, a recent Italian real-world study has provided some evidence that the drug apremilast, which is considered a phosphodiesterase-4 inhibitor, could be a useful treatment…
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…
According to a story from Medical Xpress, a recent study has revealed that a certain genetic premutation affected the FMR1 gene could be a risk factor for far more health…
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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