Devic's disease, also known as neuromyelitis optica (NMO), affects the spinal cord and the optic nerves. It is a relapsing-remitting disease, meaning its symptoms can appear and disappear. In NMO,…
Jack played high school volleyball and served with the junior fire department. He hopes to become an engineer. Donovan played saxophone, competed as a wrestler, performed theater, and reached a…
A rare, neurological disorder affected three women with the same career in Spokane, Washington over the last two years. All three were healthcare workers, so it would be easy to…
An Australian couple shares their story of finding out that their daughter Aviana, has spinal muscular atrophy (SMA). SMA is a rare genetic disease, which effects the nerves that control…
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…
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…
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…
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