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 ...
Morningstar2mon
Barth Syndrome Foundation Calls for Urgent FDA Action Following Elamipretide Delay - Morningstar
Barth Syndrome Foundation and our international affiliates comprise the only global network of families, healthcare providers, and researchers solely driven by the mission to save lives through ...
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.
Channel 30003d
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 ...
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 ...
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.