I was alarmed and yet inspired by a recent article I read. Narcolepsy affects nearly 200,000 people in the United States, but sadly goes undiagnosed and undertreated. Don’t let this…
Alicia Goss is a college student, and for a long time she didn't know she had a rare condition called Wilson disease. She just wanted to go out and have…
Nikeh Gray has sickle cell anemia and has been in and out of the hospitals for years. Not only is she constantly managing her disease, as the Guardian reports, but…
Sharks have a fascinating immune system (and as far as we know, they don't develop idiopathic pulmonary fibrosis (IPF). They can repair wounds and injuries quickly. Researchers even believe that…
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,…
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…
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…
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:…
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…
Thrombocytopenia. The condition doesn’t sound so bad. Low Platelets. It seems as though you have a low savings. You can’t buy that Snickers bar, you have low platelets. You can’t…
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…
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…
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…
Most parents have had their child fall asleep in an unusual place (think on the potty) at least once. But when it happens frequently, (during mealtimes, in the middle of…
At #RDDNIH, or Rare Disease Day at NIH, I was definitely troubled by a world map presented, that displayed emerging infectious diseases by region. Let's unpack this a little bit...…
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