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...…
If you’ve ever known someone waiting for an organ transplant, then you know what it’s like. They walk around with a beeper like a high school senior waits by the…
What would you do if you had a medical condition that required treatment that costs thousands of dollars a week? If nothing else, you’d reach your deductible in the first…
The Endocrine Society's Endo 2017 is the world's largest endocrine science presentation. Attendees will be able to network, learn about the newest product and technology updates, listen to thought-leaders, and…
The Muscular Dystrophy Association's Scientific Conference Registration closes February 28th! This event brings all the important players together in the Muscular Dystrophy world to promote research around management, treatment and…
"Estoy cansado de morir y temo que estaré muriendo por el resto de mi vida". Esta es una verdad poderosa para cualquier persona que trate día a día con una…
One of my favorite scenes from Forrest Gump was the titular main character running across the United States. He got all kinds of press, as well as masses of people…
The idea that a possibly life-altering medication is being denied to children is certainly something that will get the fires of the masses stoked. Imagine how inflamed the mob will…
Con enfermedades raras, hay mucha información que es desconocida o misteriosa para el público en general, los pacientes, e incluso los médicos. El síndrome de Ehlers-Danlos (EDS) es un grupo…
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