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…
In 1932, a Dutch physician named Johannes C. Pompe noticed significant muscle weakness in an infant he was treating. In the years that followed, scientists would not only name the…
“Sound Bites, An Evening of Food, Wine and Music” is TONIGHT! The event is at the National Press Club in Washington, DC. It begins at 6:00 pm with appetizers and wine…
Los médicos no siempre saben mejor. Eso es algo que cada padre cuyo hijo tiene una, enfermedad crónica rara entiende. Estos padres que aparecen en raras Conectar finalmente tuvieron un…
During Rare Disease Week, I have met the most amazing patients and advocates whose personal experiences have kept me motivated to continue spreading awareness not just for my disease, but…
As humanity collectively slinks into the cold, dark days of winter, we could all use something to warm us up… or at least bring a small slice of sunshine. Well,…
With the new administration, questions of coverage, the ACA and how it effects those of us affected by rare disease have been causing major concern. Today at the 2017 Legislative…
Last night, I attended a documentary screening of "Up For Air" in Washington, DC for Rare Disease Week (or #RareDC2017, #RareDiseaseDay). It follows 53-year-old Jerry Cahill over the course of…
Nobody fights alone… or at least I hope so. And some individuals on an idiopathic pulmonary fibrosis (IPF) journey were sweetly reminded that there are others who walk with them…
The All of Us Research Program (The Program) at NIH is AWESOME. Here's what I learned at Rare Disease Day at NIH (#RDDNIH) and what you should know too, so…
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