CureDuchenne has launched the CureDuchenne Biobank, a neutral, centralized and self-funded data hub that will unlock information to accelerate research. It will provide a consistent set of resources for scientific…
If you are unable to work because of a medical condition, you may qualify for disability benefits from the Social Security Administration (SSA). The SSA oversees two different disability programs, Social Security Disability…
By Rachel Whetstone from In The Cloud Copy James DeLine works as the village doctor in La Farge, Wisconsin, a rural community with a population of just 750. The village…
By Caitlin Seida from In The Cloud Copy Jacob Myers was an active 15-year-old until last spring. The honor roll student, who also sang in the school choir and participated…
By Caitlin Seida from In The Cloud Copy If you asked Sarah Baldwin, age 19 and a sophomore at Syracuse University, about the success of the comic book she helped…
By Danielle Bradshaw from In The Cloud Copy Scientific teams at the Centers for Disease Control (CDC), the National Institute of Environmental Health Sciences (NIEHS), and other research centers have…
Happy Holidays, Zebra Community! As we gear up for the holiday season, we're highlighting four articles about managing rare disease during the holidays. We have some new articles about spending…
By Caitlin Seida from In The Cloud Copy 2019 was a record year for drug recalls due to safety and quality concerns. It’s also been a record year for the…
By Caitlin Seida from In The Cloud Copy Medical alert dogs can give their companions a newfound sense of independence and freedom. Enter Bill, a golden retriever owned by Laura…
By Rachel Whetstone from In the Cloud Copy Pete Frates, known for being an Amyotrophic Lateral Sclerosis (ALS) advocate and an inspiration for the Ice Bucket Challenge, has passed away…
By Caitlin Seida from In The Cloud Copy Although it’s already known that the cause of Alexander disease (AxD), a type of leukodystrophy, is a misfolded protein known as GFAP.…
By Jack Gerard from In The Cloud Copy Medical response dogs are trained to recognize potential medical problems with their owners, alerting them or someone else when they detect a…
By Jodee Redmond from In The Cloud Copy University researchers Richard Terek and Qian Chen have published a paper drawing attention to a possible treatment for chondrosarcoma, which is a…
By Jack Gerard from In The Cloud Copy When it comes to the diagnosis and treatment of diabetes, many consider this to fall under the role of a primary care…
By Rachel Whetstone from In The Cloud Copy Jane Edwards is a 45-year-old woman from Stamford, Lincolnshire. She has a rare autoimmune disease called vasculitis. Her immune system attacks her…
Happy Thursday, Patient Worthy Friends! This week we're highlighting two stories on families who went on a diagnostic odyssey to understand their children's rare diseases. Additionally, we have some big…
By Caitlin Seida from In The Cloud Copy People living with the severe hemophilia A may soon see a new treatment option available thanks to the work of BioMarin Pharmaceuticals.…
By Jack Gerard from In The Cloud Copy Travis Allen, of Lisbon, Iowa, was a painter who specialized in photorealistic works. Unfortunately, a rare autoimmune condition stole his eyesight…
By Rachel Whetstone from In The Cloud Copy. Rheumatoid Arthritis (RA) causes pain and suffering to patients around the globe, and it can be difficult to diagnose in the early stages.…
By Jack Gerard from In The Cloud Copy. While vaccines are largely considered safe for most of the population, there are some people whose doctors recommend avoiding at least some…
By Jodee Redmond from In The Cloud Copy The results of a study have found that betaine and the active form of folic acid, L-methylfolate, are not effective measures to…
By Rachel Whetstone from In The Cloud Copy For millions of Americans who are affected by rare diseases, hope and health lies in the availability of plasma donations. One use…
For millions of Americans who are affected by rare diseases, hope and health lies in the availability of plasma donations. One use of the donated plasma involves the extraction of…
Happy Thursday, Readers! This week we're highlighting four articles on rare disease and chronic illness patients and ways to provide support that goes beyond treating physical symptoms. First, we have…
Contact: Britta Vander Linden [email protected] 917.604.6518 30 million Americans need more treatment and diagnostic opportunities https://everylifefoundation.org/rare-disease-community-calls-on-congress-fda-to-enact-life-saving-public-policy-solutions/ (Washington, D.C., December 4, 2019) Hundreds of rare disease advocates from around the country were brought to Washington,…
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