When Jessica Karnes was a kid, she was told she was no longer allowed to eat chicken nuggets. As a self-proclaimed lifelong picky eater—and a four-and-a-half-year-old at the time—this was a…
Happy Thursday! We're back with a batch of new article! This week, we have another article from PW contributor, Tom Seaman, who uses his experience with dystonia to help people…
By Rachel Whetstone from In The Cloud Copy Shelly Wheaton began a car sign campaign in September to look for a live kidney donor. She was on dialysis because…
Happy New Years! We're back with a batch of new article! This week, we're highlighting four stories: an interview on 20 years with dystonia, a young woman stuck in a…
Written by: Paul Pavao The most important thing I can tell you is that Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) can be survived. As of 2019 survival requires a bone…
I wanted to invite the invisibly disabled community to join the screening of ‘We Are Visible’, my film about people living with an invisible condition (Ehlers-Danlos syndrome) all around the…
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.…
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