Polycythemia Vera or PV, is a rare blood cancer. It's caused by a mutation which results in the overproduction of red blood cells. Too many blood cells significantly increases your…
Cystic fibrosis patients in the UK are planning a protest on November 19th, 2018 with the goal of getting Orkambi, an important cystic fibrosis drug, covered on the NHS. This…
According to a story from ncbnewyork.com, a recent study found that $7 million on donations on crowdfunding sites for medical patients have gone towards treatments that are medically unsound and…
According to a story from Buzzfeed News, Paige Rogers was 21 years old when she was admitted to the hospital. She was having trouble breathing because of cystic fibrosis. Over…
Neuroendocrine tumors are growths which form from neuroendocrine cells in various places throughout the body. They can occur in the gastrointestinal track, the pancreas, the lungs, the thymus, and other…
According to a story from Raconteur, finding sufficient funding for the development of new therapies for rare diseases has always been a major challenge. Rare diseases are defined in the…
According to a story from UCI News, University of California Irvine scientists have developed an innovative immunotherapy that could screen patients in order to analyze the composition of their tumors…
The annual Global Genes Rare Patient Advocacy Summit is wonderful place for families affected by rare disease to come together and interact face to face with advocacy leaders in addition…
Some experiences are seen through rose-colored glasses while others are hazy or ambiguous. Many, we try desperately to remember while others we we wish we could forget. And a special…
I hope that you know a wonderful doctor. The type who listens wholly, respects you, validates your concerns and opinions, and goes above and beyond to make sure you get…
A recent study has looked into the use of video visits with patients by clinicians in Sweden, to try to find out how doctors decide which patients to offer them…
In the movie "Dallas Buyers Club" the main character, Ron Woodroof, contracts HIV/AIDs and starts getting drugs from an organization that imports medicine from Mexico. Similarly, many London patients are…
According to a story from Vietnam News, mother Huyen Trang has seen two of her children face death's door within mere months of being born. Her first child died at…
In 1993, researchers found one of the causes of familial amyotrophic lateral sclerosis (ALS). ALS is a neurodegenerative disorder which affects the motor neurons. Motor neurons are responsible for transmitting…
Happy Friday! Winter is coming and so is FDA news! Take a moment to check out some recent FDA announcements. FDA Approves Triplet Immunotherapy Combination for Multiple Myeloma Big news…
Are you interested in learning about the latest trends and drug development in the rare disease field? Then you should check out a special Journalist Team Presentation from Global Data…
According to a story from telegram.com, a group of researchers from the University of Massachusetts medical school recently announced that they may have reached a major treatment breakthrough for genetically…
Society teaches us to make comparisons all of the time. When you chose to participate in a competitive game, and you want there to be a winner and a loser,…
While I write about rare and neglected disorders all the time, very few people in my life actually know about my own experience. I have hypermobile Ehlers-Danlos syndrome (EDS), a…
In a recently shared article, the University of Southern California has announced that the United States Food and Drug Administration has approved a high-tech brain scanner at the Keck School…
According to a story from BioPortfolio, the biopharmaceutical company SpringWorks Therapeutics recently announced that the US Food and Drug Administration (FDA) has given the company's experimental product PD-0325901 Orphan Drug…
My name is Jasmine Taylor and I am 12 years old. October is one of my favorite months (July is the other one- it’s my birthday month!)… Let me tell…
A new study into the potential use of a tau-PET tracer for Alzheimer’s disease has produced promising results. The data was presented at the Clinical Trials on Alzheimer’s Disease Conference,…
A recently published report on neuromuscular disease care outlines the current challenges and future opportunities in diagnosis and treatment. The report, titled ‘Understanding Neuromuscular Disease Care’, was funded by the…
According to a story from Scleroderma News, many rare disease patients will be heading to the polls on November 6th. Many of them are as deeply concerned about the high…
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