Some lucky people live their whole lives only taking medication intermittently, like pain killers when they have a headache or acute pain. Maybe they take an anti-inflammatory when they have…
Imagine what it would be like to feel weak every time a strong emotion took hold. Of course, we all know that feeling when our knees feel weak or our…
It was an ordinary day for 8th grade student Landon Severson. He was just starting the new school year and went to marching band practice. However, his day changed when…
You brush your teeth, put on your pajamas and climb into bed. Someone attaches wires and electrodes to your head, chest and legs. You drift to sleep under the watchful…
Most people freeze when they hear the first two notes of John Williams’s theme from the movie Jaws. Lovers of classical music and band nerds will wait a few more…
Iva Rauh is a Pemphigus Vulgaris patient and advocate living in Maryland. Originally from Eastern Europe where the gene for this disease is prevalent, this is her plea to the…
Welcome back to Editor's Choice! This week we have an interesting take on Parkinson's treatment. We also have an empowering article from one of PW's rare disease contributors. We are all feeling the…
We can only imagine how terrible it would be to be diagnosed with something that sits in our bodies for days or weeks, festering. For some, we find comfort in…
Fact: Tourette syndrome (TS) is recognized as a neurological condition that affects the brain and nervous system. About 1 out of 100 people are affected by this condition that's frequently…
The Rare Impact Awards for 2017 will be held this year, on May 18th, at 6:30 pm in Washington, DC. The Rare Impact Awards is the National Organization for Rare Disorders (NORDS)…
If dance is the universal language, then what does NC State’s annual Dance Marathon have to say--especially to type 1 tyrosinemia (TYR)? A lot, it turns out. The numbers seem…
After lobbying during Rare Disease Week on Capitol Hill a couple of weeks ago, I was convinced we were pretty successful with our congresspersons in showing them how vital NIH…
I recently covered an author who had some solid advice for drug makers in regards to the rare disease pricing problem. The following drug maker may or may not have…
Ladies and gentlemen, it's that time of year again, when I put on my superhero cape, I ascend to the top of the highest mountain, and at the top of…
Imagine, three to 10 months with your new born baby in a Neonatal Intensive Care Unit (NICU) born with a potentially mortal disease or defect. You’ve battled through surgeries, recoveries,…
Canadian, Barb Charboneau, felt something was wrong with her around the age of 11. Years later, she was diagnosed with Tourette syndrome. Then it took many more years for her…
“Breaking The Sickle” is the name of a new children’s book. At first glance, you might think it is about destroying communist regimes, it is in fact a book about…
Chucky Bartolo of Lovin' Malta introduced Jake Vella to the world yesterday. Jake suffers from the rare disease ROHHAD. While he was a regular kid for the first five years of his…
Sometimes, the race to develop breakthrough treatments for rare and devastating illnesses can feel less like the Indy 500 and more like a game of Curling played by armless sloths.…
In the post-Sputnik era, science was king—or so says Peter Agre as he recalls the golden age of science. But, when is it wise to dismiss the “ivory tower” mentality…
Irrelevant, insignificant, ignored, un-empowered, but worst of all INVISIBLE. Let me let you in on a big secret. Those of us who are fighting everyday with the simplest of tasks,…
Cure Sickle Cell is a nonprofit organization. One of their goals is to raise money for research. Sickle cell is an inherited disease. Moreover, the disease prevents red blood cells…
April 17, 2017 is World Hemophilia Day. This is significant not only for people with hemophilia, but also for those with other bleeding disorders like von Willebrand disease (vWD). If…
10 Cosas que he aprendido de vivir con el síndrome de Ehlers-Danlos 1. No es tan malo ser espontáneo Cuando era más joven tenía planes y listas para toda…
Alicia Goss is a college student, and for a long time she didn't know she had a rare condition called Wilson disease. She just wanted to go out and have…
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