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…
Se les ve en todas partes - a pesar de que se ven fuera de lugar en la tienda de comestibles, o en el cine, o - peor aún -…
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