FDA approves Sarepta’s controversial drug for Duchenne muscular dystrophy

Originally Published by Ed Silverman for Stat News.  FDA approves Sarepta’s controversial drug for Duchenne muscular dystrophy | Stat News The Food and Drug Administration on Monday approved a controversial drug to treat Duchenne muscular dystrophy, a rare disease that confines boys to wheelchairs and condemns them to an early death. The decision came after months of […]

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Bertrand Might

  Bertrand is a very special little boy. He was the first person ever to be diagnosed with a rare, fatal genetic disorder called NGLY1 that has left this seven-year-old paralyzed. Because the disease was only identified by scientists in 2012, and only a few people worldwide have been diagnosed with it, there is no […]

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GOP Platform Supports Terminally-Ill Patients’ Right to Experimental Drugs

Originally written by Mary Lou Lang-Byrd for freebeacon.com The Republican Party platform committee adopted language on Monday supporting terminally ill patients’ access to drugs that have not been fully approved by the Food and Drug Administration. “We commend those states that have passed Right to Try legislation, allowing terminally ill patients the right to try […]

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Right to Try model legislation

Right to Try Model Legislation A bill to authorize access to and use of experimental treatments for patients with an advanced illness; to establish conditions for use of experimental treatment; to prohibit sanctions of health care providers solely for recommending or providing experimental treatment; to clarify duties of a health insurer with regard to experimental […]

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