Frankie Jr. Muretic Frankie Jr. Muretic lives in Mississauga in Ontario, Canada. One morning he woke up with a rash, causing his parents concern. They brought the five-year-old boy to…
According to a story from news-medical.net, a team of scientists affiliated with the Swedish Karolinska Institutet have developed a new method for categorizing patients with the rare inflammatory bowel disease…
July is hemochromatosis awareness month - and in its honor, below is some useful information that could provide helpful. One thing to remember about Hemochromatosis is that early detection is…
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The FDA is putting patients with rare diseases front and center knowing that these patients have little support and in many cases cannot find specialists to diagnose and treat their…
Seems like we JUST had a presidential election, right? But we're in the dead of summer 2019, inching closer to a presidential election that will once again take over our…
Happy Fourth of July Season! Today, we're highlighting stories about research and social media, robots in caregiving, sisters carrying each others' babies, and AI advancing glioblastoma research. After this past…
Inflammatory Bowel Diseases Inflammatory bowel diseases (IBD) is the overarching term for both ulcerative colitis and Crohn's disease. In Canada, there are around 270,000 individuals living with the one of…
According to a story from Newswise, scientists affiliated with the Huntsman Cancer Institute (HCI) of the University of Utah have found in recent lab studies that the experimental drug selinexor…
Anita Lawson was paying the doctor a visit for her annual checkup in 2003 when she was told something that surprised her: she had anemia. She had some issues with…
In May 2016, I was diagnosed with a rare genetic neurological disease called adrenoleukodystrophy (ALD). Sadly, it's incurable and there's no medication to ease my condition. Since then, my life…
China has been making waves lately, improving its efforts to efficiently and effectively provide healthcare for its nearly 1.5 billion population. “Health is a prerequisite for people's all-round development and…
Happy Thursday! Today, we're highlighting stories on three patients facing different struggles: a professor, a Jeopardy host, and a man from New Jersey. We also have an article about a…
In honor of its 30th anniversary, the National Organization for Rare Disorders (NORD) has announced ten new grants as part of its Rare Disease Research Grant Program! NORD is the…
According to a story from Pulmonary Hypertension News, a recent study has found that lapses in treatment adherence can result in serious side effects for pulmonary arterial hypertension (PAH) patients…
According to a story from princetoninfo.com, Sara Cooper was diagnosed last November with amyotrophic lateral sclerosis. Sara has had an active career as an event planner, marketing consultant, and real…
According to a story from Cancer Therapy Advisor, a recent study published in the journal Cancer Medicine indicated that chronic lymphocytic leukemia (CLL) patients who dealt with adverse events during treatment…
According to a press release from the French biotechnology company Inventiva, the company has completed recruitment for a phase 2 clinical trial evaluating its experimental mucopolysaccharidosis VI drug, odiparcil. About…
Von Willebrand disease is the most common inherited blood clotting disorder that affects humans. The disorder can also be acquired. Although it is considered common, the majority of cases do…
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Social media, and especially Facebook, have become our “windows to the world”. According to a recent article that appeared in The Michigan Public Health News Center, scientists are using…
According to a story from Charcot-Marie-Tooth News, a recent study was conducted that compared the presentation of symptoms between two different variants of Charcot-Marie-Tooth disease (CMT): CMT4B1 and CMT4B2. The…
According to a publication from Stat, researchers from the University of Michigan-led Genes for Good program have recruited over 20,000 Americans through its smartphone app. Participants complete questionnaires on the…
Jane Biehl Jane Biehl has worked as a professor, rehabilitation counselor, and a librarian. She holds three different degrees, and spreads her knowledge through freelance writing. She also has a…
Adapting to a long- term health condition, is not an easy road to be on. There are many phases we go through during our journey from denial to acceptance. It…
From Friday, June 7th to Sunday, June 9th, 2019, I had the privilege of attending the 2019 International Waldenstrom's Macroglobulinemia Foundation Educational Forum. This year, the annual event was held…
Meet 29 year-old Cary Velazquez -- make-up artist in Puerto Rico with the rare disease osteogenesis imperfecta (OI), (also known as “brittle bone disease” and “glass bones disease”) who has…
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