We need to talk about adult rare disease patients. Adults who have a rare disease diagnosis are faced with a blaring issue-- I'm speaking for a large number of adults here,…
According to a story from the Andover Advertiser, mother June Beere has kicked off a campaign to open a cancer support center after her 42 year old daughter Gemma Kent…
Doctor Alan Pestronk has identified a new and very rare autoimmune disease. He is now trying to spread the word about its existence to other doctors in an effort to…
According to a story from BioPortfolio, the biotechnology company Tiziana Life Sciences plc recently announced encouraging results from an interim safety review of the company's Phase 2a clinical trial. This…
An Indian health policy initiative meant to provide funding to rare disease patients has struggled to gain approval from the country's administration, according to a publication from DNA India. First…
According to a publication from Karolinska Institutet, a medical research university near Stockholm, Sweden, new research led by the University suggests that regulatory T cells have an especially important role…
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Dr. David Porteous, a General Practitioner in Bristol, England recently reported to the Bristol Cable, a community-run newspaper, that he does not agree with the extensive list of treatments being…
According to a story in the New York Times, cases of measles in the US have surpassed 700 in the year of 2019 so far. Regarded as the most serious…
Researchers have recently uncovered two new rare diseases caused by the same mutation. This recent discovery is giving more families answers, and should hopefully begin to improve patient outcomes. The…
Mesothelioma Mesothelioma is a rare form of cancer most commonly caused by asbestos exposure. Unfortunately, after the time of exposure, it can take between 20 and 50 years for a…
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Just one year ago David Chen, a forty-year-old policeman who lives in Toronto, was walking home after playing volleyball. According to a recent article in CBC Canada News, a…
There is a new show on television that showcases the experiences of patients and doctors at the Queen Elizabeth Hospital in Birmingham. On its first premiere, it showed the…
According to a story from EurekAlert!, scientists have always sought to improve their understanding of the role that the environment and genes play in different diseases, as well as the…
In a world that is just beginning to make space for the open discussion of transgender individual's life experiences, there's still a huge gap in the conversation regarding healthcare. This…
There was a time when most children diagnosed with a rare condition did not live until adulthood. But now, with advances in medicine, many individuals are living long, full lives…
Within the pharmaceutical industry, we need 1) better policies for patients and 2) improved communication/education of the policies that do exist for patients and the rights that they have. Ultimately,…
According to a story from BioSpace, the biotechnology company Viela Bio recently announced that the US Food and Drug Administration (FDA) has awarded an experimental therapy in development by the…
Happy Thursday! We hope everyone's spring is off to a good start! As the weather warms up, we're sharing stories demonstrating patient hope, strength, and resilience. We start with a…
In 2012 Tessa noticed a gap between her front teeth. She was a little confused. She had had braces when she was younger and her teeth hadn’t had any gaps…
According to a story from globenewswire.com, the gene therapy company Fibrocell Science, Inc. and the biopharmaceutical company Castle Creek Pharmaceuticals have recently announced a collaboration between the two companies. The…
According to a report from ArsTechnica, scientists believe that some people might have medicinal poop. What might sound like a bad punchline to a child’s joke is actually the result…
Results from the largest United States study to date of Lambert-Eaton myasthenic syndrome (LEMS) have indicated that for the majority of patients, Firdapse is the most effective treatment option currently…
Severe Combined Immunodeficiency Severe Combined Immunodeficiency (SCID) is a rare disease which causes patients to practically have no immune system at all. That means that for these patients, even a…
According to a publication at BioPortfolio, Belgian researchers are developing an orally-administered antibody medication for patients living with gastrointestinal disorders. In most cases, antibodies are injected into the bloodstream for…
Alex Knoll Alex Knoll is not your average 14-year-old. In addition to being a student, he's also an inventor, entrepreneur, app creator, and public speaker. Most of the Idaho resident's…
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