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Family Shares Frustrations After FDA Rejects Drug for Ultra-Rare Barth Syndrome
SAN FRANCISCO COUNTY, CALIFORNIA, JUN 28 – FDA rejected a drug for Barth Syndrome, affecting about 150 U.S. patients, after requesting more efficacy data, delaying treatment options for this rare genetic disorder.
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Family shares frustrations after FDA rejects drug for ultra-rare Barth Syndrome
By Sooji Nam Click here for updates on this story SAN FRANCISCO (KPIX) — With the FDA recently rejecting a drug application that aims to help those living with Barth Syndrome, one Bay Area family is frustrated by the delay of approved treatments in the rare disease community. Approximately 150 people live with Barth Syndrome nationwide, an ultra-rare genetic disorder that affects only males and impacts muscle and heart muscle health. “He has…
·Idaho Falls, United States
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