Being diagnosed with pulmonary hypertension (PH) may feel like life is being turned upside down. One woman is sharing her story to allow others a glimpse into what it's really…
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…
Researchers at Massachusetts General Hospital (MGH) have found that mice with MC1R, the gene that is responsible for red hair, are more susceptible to toxins that are damaging to neurons…
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…
I thought I’d had a bad day today, but quickly changed my mind after reading about a part-time teacher, married mother of four kids who was only 37 years old…
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…
CysticLife.org, una sitio de web para la comunidad de la fibrosis quística (FQ), se está embarcando en un esfuerzo histórico de la recaudación de fondos para apoyar la investigación dirigida…
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.…
It’s hard to imagine what it would be like to hear that there is something wrong with your unborn baby. For those of us who have never heard this, it…
A stigma is a negative view of a person based on something about him or her. If you think about it, many illnesses get stigmatized—not just mental illness. People with…
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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