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Girl with "mermaid syndrome" dies at age 10Shiloh Pepin, who was born with sirenomelia, or "mermaid syndrome," has died at the age of 10. She passed away last Friday in Maine. Sirenomelia is a condition in which one's legs are fused together from the waist down. Pepin did not have any genital organs or a large intestine. Most... |
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Folotyn Gets OK for Rare Lymphoma TreatmentThough the news might not make a splash for most, those with relapsed and refractory peripheral T-cell lymphoma are rejoicing.The FDA has approved Folotyn (pralatrexate) for for treatment of this... ... |
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Sabril approved by FDA to treat infantile spasmsOn August 21, 2009, the U.S. Food and Drug Administration (FDA) approved Sabril (vigabatrin) to treat infantile spasms in children ages 1 month to 2 years. Infantile spasms are a... ... |
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Osteogenesis ImperfectaOsteogenesis imperfecta, also known as brittle bone disease, is an inherited condition. Almost all individuals with osteogenesis imperfecta have fragile bones that break easily. Photo © A.D.A.M. ... ... |
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BPNA Rare Disorders Symposium September 29, 2009The 8th European Pediatric Neurology Society Congress is being held September 30 - October 3, 2009, in Harrogate, England. A Rare Disorders Symposium will be held on September 29 prior... ... |
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Living With Ataxia online support groupAtaxia means loss of voluntary muscle control, resulting in lack of balance and coordination. Some people may have ataxia due to an inherited genetic disorder. Others may develop ataxia as... ... |
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