Keenan Cahill is a YouTube sensation who just happens to have Maroteaux-Lamy syndrome. Although, after watching his channel for a half hour, he isn't letting it hold him back from…
La tecnología actual nos está llevando a nuevas (in)cómodas alturas, a un ritmo que pocos les sorprenderia. Para aquellos que están viviendo con la narcolepsia, este avión no tripulado de…
Here’s some down and dirty information about aplastic anemia, an autoimmune disease that results when the body cannot produce life-sustaining bone marrow, and doesn't create enough red and white blood cells and platelets.…
Chronic granulomatous disease (CGD) is a genetic condition that affects the immune system. It's in the family of primary immuno-deficiencies, and makes it hard for the body to fight infections…
How many people don't like going to the dentist? A lot. And how many people with Ehlers-Danlos Syndrome (EDS) hate going to the dentist? Most of them. Or at least…
One day you go from being an active person full of life to waking up not feeling like yourself. You get a bad cold. You never seem to bounce back.…
During one of those “dog days of summer,” I was searching around for some inspiration; I’d been feeling blue because a friend of mine, who is in her 50s and…
The human body is a magnificent machine, and each cell has a role to play. In a way, it's like a jigsaw puzzle that ordinarily is put together perfectly. The only…
Are you ready to start a family? Or are you considering adding another child to your nest? If so, the March of Dimes shares some insight on what moms or…
Looking for a way to celebrate Dysautonomia Awareness month this year? Then you need to check out Dysautonomia International. Why? Because this incredible organization provides wonderful support to the dysautonomia community…
Carnitine palmitoyltransferase II deficiency (CPT II) is a long-winded way of describing a fatty acid oxidation disorder that prevents the body from using fat. It's caused by enzymes that aren't properly functioning,…
In this article, Dr. Richard Fogoros examines the past and present of dysautonomia while also offering some hope for the future. Among his observations: the condition is far from new,…
Are you planning on handing out candy for Halloween? If so I have a suggestion for you! This is the perfect opportunity for you to advocate for the rare disease…
PW Contributor Angie just blogged about one of the most important messages us in the rare disease world need to hear: The Power of Positivity. Read more below: Positivity is hands…
Who doesn’t love a good story? A story that speaks to us. A story that spins a negative into a positive. When I listen to a person tell a story, I…
Wouldn’t it be nice if you could talk to one of those “nationally known” specialists about your aplastic anemia? Well, if you can make it to West Palm Beach, Florida…
Conocemos la persona "típico" que practical el yoga: blanca, "de la nueva era", delgada, extremidades delgadas y acrobáticas. ¿Mencionamos delgada? Con los años, el yoga se ha convertido en la…
They are called, "butterfly children." These butterfly children earned their names for their fragile skin---said to be as delicate as the wings of a butterfly. The official name of…
Addison's disease is another name for adrenal insufficiency -- meaning the adrenal glands don't produce enough of the hormone cortisol and frequently create insufficient levels of aldosterone. Cortisol is the…
Looking for great ways to raise awareness (and, therefore, money) for trigeminal neuralgia? Light up your teal lights? TEAL lights…. as in the color. ‘Cuz if pink worked wonders for…
Approximately one in 15,000 people have a defect in their HTT gene and the outcome of that defect is ultimately life-ending. It's called Huntington's disease, or HD, and the average…
Sunday October 2, 2016 was the IDF Walk For Primary Immunodeficiency (PI) in Boston, MA! As a partnership between the Immune Deficiency Foundation (IDF) and Shire Pharmaceuticals, this walk began at Boston…
From the day my mother introduced us when I was eight, I've believed my step-father was my hero. He is a strong, hardworking, honest man whom I saw as indestructible.…
If you, or someone you love, has Duchenne muscular dystrophy (DMD), then each new possible drug that's brought before the FDA brings with it a sense of hope. Race to…
Takeda Pharmaceuticals is looking for patients to enroll in their new trial, described as; "A Phase 2, Randomized, Controlled, Open-Label, Clinical Study of the Efficacy and Safety of Pevonedistat Plus Azacitidine…
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