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…
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)…
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…
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,…
The liver is a pretty important organ. Some people think of it as the place where alcohol goes. Your neighbor’s kid in the 6th grade will tell you that it…
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…
Friedreich's ataxia (FA) is a rare and painful disease. With few treatments available to treat the genetic mutation, most therapy is aimed at controlling symptoms. Clearly, these short-term band-aids aren't…
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…
The key to solving ANY problem is knowledge. And so the same goes for raising awareness for those living with any type of illness. The more we know about the…
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.…
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…
I was alarmed and yet inspired by a recent article I read. Narcolepsy affects nearly 200,000 people in the United States, but sadly goes undiagnosed and undertreated. Don’t let this…
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…
Nikeh Gray has sickle cell anemia and has been in and out of the hospitals for years. Not only is she constantly managing her disease, as the Guardian reports, but…
Sharks have a fascinating immune system (and as far as we know, they don't develop idiopathic pulmonary fibrosis (IPF). They can repair wounds and injuries quickly. Researchers even believe that…
Ay Canadá, la gente piensa que eres todo acerca de ser muy educado y su jarabe de arce riquísima, pero yo sé la verdad: Usted sabe cómo luchar y que…
Sólo quedan TRES días más para que las familias, los grupos de defensa de los pacientes y los investigadores den aportes a la nueva iniciativa del NIH sobre la investigación…
Parenting can be very stressful. Whether a stay-at-home parent or a working parent, a single parent or a married parent, mother or father, parent of one child or several children,…
A year ago, a WUSA9 News reporter named Nikki Burdine of Dumfries, Virginia shared her personal story with the world. She revealed that she has Tourette’s syndrome. In her news…
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