Americans With Rare Barth Syndrome Losing Hope in FDA
9:39
MSNInside Edition - Video
Americans With Rare Barth Syndrome Losing Hope in FDA
Barth Syndrome is a genetic disease so rare that fewer than 200 Americans have it, and there are under 300 known cases worldwide. It hinders the mitochondria in cells and primarily impairs the heart's functionality. Americans with the illness were given a ray of hope in recent years thanks to an experimental drug called Elamipretide. The FDA ...
7 months ago
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Five-year-old Joe has Barth Syndrome, which weakens his muscles, including his heart. Aged just two-and- a-half years-old he spent a record breaking 251 days being kept alive by an artificial heart until a suitable donor was found. Thanks to BBC Children in Need funding, mum Rachel regularly gets a break while a nurse from the Jessie May Trust in Bristol entertains and looks after Joe. To help us help more families like Joe's, please give whatever you can and make our Appeal Night total even big
Five-year-old Joe has Barth Syndrome, which weakens his muscles, including his heart. Aged just two-and- a-half years-old he spent a record breaking 251 days being kept alive by an artificial heart until a suitable donor was found. Thanks to BBC Children in Need funding, mum Rachel regularly gets a break while a nurse from the Jessie May Trust in Bristol entertains and looks after Joe. To help us help more families like Joe's, please give whatever you can and make our Appeal Night total even big
FacebookNov 20, 2014
FDA approves drug for treatment of rare mitochondrial disorder
FDA approves drug for treatment of rare mitochondrial disorder
jhu.edu5 months ago
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