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Wilson Disease: the rare, autosomal (meaning it occurs in both men and women), recessive (meaning that an individual must inherit one copy of the mutated allele from each parent to…
As families and individuals dealing with rare disease, we all want research and answers sooner- but we soon learn how slow that process is. But check out the hope below: 9500…
Mycosis Fungoides (MF) is a rare form of lymphoma that affects usually affects the skin causing inflammation, tumors, plaques, and redness. It only affects 3 to 4 people in a…
Dr. David Fajgenbaum was read his last rites- but he did not die, instead he turned the rare disease research model around. He is now working to expand the model…
Kids diagnosed with EB, or Epidermolysis Bullosa, have skin as fragile as a butterfly’s wings. DEBRA stands for Dystrophic Epidermolysis Bullosa Research Association, the patients association for this fragile skin disorder which…
According to PW writer Kathy, there was a shining star at Rare Disease Week on Capitol Hill's Rare Artist Reception. Olivia is the youngest of four daughters. She was diagnosed…
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