News

First oral drug shows promise for Barth syndrome heart and muscle symptoms
Researchers at Tohoku University have discovered that an oral drug called MA-5 can improve both heart and muscle problems in ...
Bay Area family shares frustrations after FDA rejects drug for ultra-rare Barth Syndrome
With the FDA recently rejecting a drug application that aims to help those living with Barth Syndrome, one Bay Area family is ...
Bay Area family affected by Barth Syndrome frustrated by delay of approved treatments
With the FDA recently rejecting a drug application that aims to help those living with Barth Syndrome, one Bay Area family is ...
Yahoo Finance2mon
Barth Syndrome Foundation Calls for Urgent FDA Action Following Elamipretide Delay - Yahoo Finance
BOSTON, April 29, 2025--The Barth Syndrome Foundation (BSF), the only patient advocacy organization solely dedicated to saving lives through education, advances in treatments, and finding a cure ...
KEYT3d
Family shares frustrations after FDA rejects drug for ultra-rare Barth Syndrome
Approximately 150 people live with Barth Syndrome nationwide, an ultra-rare genetic disorder that affects only males and impacts muscle and heart muscle health.
News-Press NOW3d
Family shares frustrations after FDA rejects drug for ultra-rare Barth Syndrome
By Sooji Nam. Click here for updates on this story. SAN FRANCISCO — With the FDA recently rejecting a drug application that aims to help those living with Barth Syndrome, one Bay Area family is ...
Channel 30002d
Family shares frustrations after FDA rejects drug for ultra-rare Barth Syndrome
It's the only drug for Barth Syndrome clinical trials. After several delays, however, the FDA announced it will not be approving the drug application. Megan believes federal budget cuts could be ...
KRDO3d
Family shares frustrations after FDA rejects drug for ultra-rare Barth Syndrome - KRDO
Approximately 150 people live with Barth Syndrome nationwide, an ultra-rare genetic disorder that affects only males and impacts muscle and heart muscle health.