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NEWS ABOUT: rare diseases

'Mermaid Girl' Shiloh Dies at 10

She had a rare condition but lots of supporters around the world

(Newser) - Shiloh Pepin, a young girl in Maine born with a rare condition known as "mermaid syndrome," has died at age 10. Shiloh wasn't supposed to live more than a few days, but "she was a tough little thing," said her mom. Shiloh's legs were fused together... More »

Pharma Under Fire Over Pricey Drugs for Kids

Lawmakers lash astronomical hikes in drugs for rare diseases

(Newser) - In the face of astronomical hikes in the price of drugs used to treat children, a congressional committee is looking into why companies have increased prescription costs as much as 18-fold when related research and marketing expenses are stable, according to lawmakers. One such company charges $69,000 for a... More »

Stem Cells Are Beating Boy's Deadly Disease

Doctors believe treatment may cure skin disorder

(Newser) - A stem cell treatment has apparently cured a 2-year-old boy's rare genetic disease, the Los Angeles Times reports. Nate Liao suffered a disorder that made his skin so fragile, it had to be wrapped in bandages at all times. Now the fatal disease is retreating, and Nate is eating, dressing,... More »

Gates Aims $100M at Polio

Foundation aims to eradicate disease

(Newser) - The world stands at the brink of eradicating polio, Bill Gates says, and his foundation yesterday awarded $100 million toward that end. One of the foundation's largest challenge grants will fund programs in four countries where the disease is still epidemic, notably Nigeria. The Rotary Foundation received the grant and... More »

Rare Disorder May Have Afflicted Lincoln

Syndrome would account for height, sons' deaths, doc says

(Newser) - Abraham Lincoln may have been the first known victim of an exceedingly rare genetic disorder, and the 16th President was probably dying of cancer when he was assassinated, an expert says. The cancer-causing syndrome would account for his height, bumpy lips, and other conditions—but corroborating the theory with DNA... More »

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