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…
Parenting can be very stressful. Whether a stay-at-home parent or a working parent, a single parent or a married parent, mother or father, parent of one child or several children,…
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,…
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…
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.…
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…
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…
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…
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…
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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