In the “As If Chipotle Didn’t Have Enough Problems Department,” they allegedly just did another scummy thing. So here’s the Chipotle Edition of How To Make An Enemy Of The…
He’s a cop who works three additional part-time jobs to make ends meet. She’s a homemaker now, taking care of their three children, ages seven, three and a half, and…
Anyone who’s ever been in a wheelchair or knows someone who has, knows the frustration of “you can’t get there from here.” All you want to do is live your…
So let me get this out of the way upfront: I’m no scientist—and no, I don’t play one on television. I struggled with science in school, which is why I’m…
When the word came out that a sick baby was in need of a bone marrow transplant and no one in his family was a perfect match, students at Emily…
Study Title: Phase 2, Randomized, Double-Blind, Placebo-Controlled, Parallel-Group Study of N91115 to Evaluate Efficacy and Safety in Patients With Cystic Fibrosis Who Are Homozygous for the F508del-CFTR Mutation Treated With…
Todo el mundo le encanta un poco de misterio, excepto cuando se trata de tipos ominosos de enfermedades autoinmunes. En un artículo de Rare Connect, un sitio web que conecta…
On their face, exercise and illness would appear to be diametrically opposed states of mind. But there’s plenty of anecdotal and scientific evidence to suggest that overall physical fitness can…
Okay, so speaking as a dude, I have a confession to make: Dick jokes make me laugh. They make me laugh hard. (Sorry…) And most guys, whether they admit to…
Guys, I am so pumped to be from Virginia right now. Having gone to the University of Virginia, I definitely have state pride, but the latest legislation passed in my…
Severe Combined Immune Deficiency (SCID), a primary immune deficiency, was once a fatal disease but is now considered a "pediatric emergency," needing immediate diagnosis and treatment. If it's caught right…
Life with chronic illness requires adaptation, and for kids diagnosed with cystinosis, adapting starts young. Sarah Larimore was barely out of infancy when her parents first heard the word “cystinosis.”…
Winters may be long in Canada, but the residents of Ontario’s Saugeen Shores are hardly cold-hearted. On April 1st, 2016, the Saugeen Shores Skating Club is inviting Ex-NHL players, figure…
Imagine your newborn not thriving? Imagine how helpless and frightened you’d feel if your child’s heart and muscles were weak. Devastating. Listen up people, there’s important information you need to know…
The National Institutes of Health (NIH) recently published an important finding from a clinical trial that could affect those with cystinosis. The research is certainly worth reading--especially if you or your loved one has cystinosis. But…
Postural Tachycardia Syndrome (POTS) prevents the body from maintaining blood pressure and blood flow to the brain and other major organs when a person stands. Here's what you need…
When all else fails and you long to be Something better than you are today I know a place where you can get away It's called a dance floor, and…
It’s Friday afternoon and I’ve been racing around at work all day pecking wildly at my PC to get my stuff done, and just as I was about ready to…
Every so often, actually more often then we'd like to think, the "suits" at health insurance companies sit down in their oak-lined board rooms and start flipping coins to see…
Register now to join patients, caregivers, physicians and other advocates from across the country at the exciting events we have planned for Rare Disease Week on Capitol Hill. We are thrilled…
Do you want to be part of cervical dystonia history? Do you want to actually get paid to take an injection to treat your symptoms? C'mon, you know the answer…
Michael White, a 45-year-old writer from Vancouver, British Colombia, put everything he had on the line to take a leap of faith and write a book about his passion: music.…
Lysosomal Storage Disorder, or LSD, is a catch-all term for more than 45 inherited metabolic disorders that result in the build-up of various toxins in the patient's cells. Currently, there is treatment…
For those of us with rare diseases, the subject of Marinol and other marijuana-derived substances has certainly come up in conversations with doctors, at least in terms of it's pain…
Anyone with rare and neurological disease can relate: there aren't a ton of treatment options and there are almost never any cures for our conditions. We often times just have to treat…
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