Wilson’s disease is a genetic disease that may cause copper build up which effects both the brain and liver. Wilson’s disease affects about 1 in 30,000 people in the world.…
Cure SMA is a nonprofit organization that has officially launched their 2017 SMA survey. This is a survey is available to those with spinal muscular atrophy (SMA) across the world. Also,…
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…
¿Qué es todo esto acerca de comer un pedazo de manzana y luego caer en un sueño profundo durante años y años? Eso es lo que le pasó a Blancanieves,…
If you have the desire to learn about Nonalcoholic Steatohepatitis (NASH), you may want to attend the International Workshop on NASH Biomarkers in Washington, DC on May 5th to May…
Want to put your money where your feet are to benefit Tourette syndrome awareness? Well, if you're in Canada on Sunday, March 26th, the West Grey-Ayton Chapter of Tourette Canada will…
If you lost a child to a rare disease and knew there was a 1 in 4 chance that it could happen again, would you try for more children? That…
Although traveling can be relaxing and rewarding, the physical demands of travel can be stressful, particularly for travelers with Ankylosing spondylitis (AS). With adequate preparation, however, those with AS can…
Cuando Skyelah nació, su madre Angela inmediatamente notó que algo era diferente. Ella tenía tres otros hijos que arrullaron y sonreían como niños. Skyelah rara vez lo hacía, de…
From now until May, 8th, a local television news station in Central Virginia, will be leading the community in raising funds for sickle cell disease (SCD). A part of the…
It goes without saying that sans research, medical science would be stuck in the Dark Ages. I doubt any of us wishes bloodletting for narcolepsy--or any reason!--was still a thing.…
Our kidneys do a lot of work keeping the body healthy. They filter fluids, electrolytes, toxins, and waste the body can't use. Inside the kidneys are blood vessels that help…
During Rare Disease Week on Capital Hill, on behalf of Lyme and dysautonomia, in addition to ALL rare disease, I lobbied my congressman to support the newly introduced (kind of) OPEN…
Doctor, por favor revise la sangre de mi bebé! La IDF alienta a los funcionarios estatales del estado de Louisiana a firmar en rutinas de detección de recién nacidos…
La terapia genética se ha hablado desde hace bastante tiempo, pero las noticias recientes han convertido la esperanza en realidad para los bebés nacidos con adenosina desaminasa (ADA). Los bebés…
We are back from Rare Disease Week in Washington, DC! And do we have some highlights for you below?! Rare Disease Day at NIH was not only informative, but encouraging.…
People who take initiative figure out how to do things on their own. And that’s exactly the case for Reva Dolobowsky and her current volunteer role as the warm welcoming…
Lately, I've been learning a lot about mucopolysaccharidoses (MPS). MPS covers a lot of territory. It refers to when the body is missing a particular enzyme--it doesn't matter which one:…
Nothing’s better than kids who rock! In my own small social circle, I hear stories about honor roll achievements, Jiu jitsu belt honors, and more. There are some pretty awesome…
Además del NIH y NORD hay muchos centros universitarios para enfermedades raras. Artículo de hoy: El Centro Boler-Parseghian de Enfermedades Raras y Negligenciadas en la Universidad de Notre Dame, South…
Anyone who has been paying attention to, well, life, knows that alcohol abuse utterly destroys your liver over time. It does so by depositing lots and lots of lovely fat…
It’s probably symptomatic of our celebrity culture that many people tend to associate diseases not with symptoms, but with famous people. For example: Multiple Sclerosis is what Richard Pryor and…
As Erica Zahn wrote back in February, MGFA's National Conference in New Orleans, LA offers patients and families the chance to hear the latest news, research and treatments for myasthenia gravis.…
Al navegar a través de Tumblr o leer tweets, se ha preguntado alguna vez, "¿Qué es un spoonie?" Es el momento de averiguarlo. En primer lugar, un spoonie es…
In my humble opinion, running sucks. But running for a cause? That’s something I can get behind. Londoner Wayne Russell, donned his sneakers and ran the entire perimeter of mainland…
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