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In Rare Form

A total of 58 posts are filed under In Rare Form
Thinking Ahead
When the European Medicines Agency approved Myozyme in 2006, Genzyme’s enzyme replacement therapy for the lysosomal storage disorder… Continue Reading
Greater Transparency Would Improve Patients’ Understanding of FDA Actions
When the U.S. Food and Drug Administration declines to approve a new medicine, its delivers the news to the drug developer in what’s known… Continue Reading
Phrank Talk about Diagnosing Rare Diseases
I studied Latin for four years. Reading it was not a problem. Translating it, though, was another issue. Once we moved on from Tres Porci… Continue Reading
TV Show Melds Dark Humor with Unvarnished View of Life with Chronic Illness
Travis Flores grew up with cystic fibrosis, spending much time in hospitals and attending support groups in the facilities where he got… Continue Reading
Spotting Birds of a Feather
John Atkinson became a birder in fifth grader when his teacher told the students to put away their science books and follow her outside.… Continue Reading
It’s Good to Have Friends
It was nearly ten years ago when Charles Alvin Middleton became ill on a flight home to Tampa Bay, Florida from a business trip. He was met… Continue Reading
Monkeying Around with a Rare Neurodegenerative Disease
At the Oregon National Primate Research Center there’s a colony of macaques that have been around since the 1960s when the Japanese… Continue Reading

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