Patient Worthy's very own Angie Randall, a mom, wife and friend with multiple sclerosis is walking to end MS. On Sunday, April 30th, 2017 at 10:45 am, at Soldier Field…
Genetic testing for rare diseases such as spinal muscular atrophy (SMA) before you conceive can be an important step in starting or building a family. It can be vital to…
La Ignorancia: Falta de conocimiento, aprendizaje, o información. Descuidado: No tener preocupación o cuidado, no prestar atención. Al tratar de encontrar las palabras perfectas para describir el reciente accidente de…
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…
An 8-year-old child in Fresno, California is receiving an FDA approved miracle drug that will possibly lengthen her life. Hayden Calafiore is the first to receive the injection as a…
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…
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