Barth Syndrome Foundation
Non-Profit & Charitable Organizations · New York, United States · 1-10 Employees
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Overview
Headquarters
PO Box 618, Larchmont, New York, 10538, ...Phone Number
(518) 213-4061Website
www.barthsyndrome.orgRevenue
<$5 MillionIndustry
ZI Rank: 1
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About Barth Syndrome Foundation
The Barth Syndrome Foundation is a non-profit that focuses on saving lives through education, advances in treatment, and finding a cure for the syndrome. Founded in 2000, the Barth Syndrome Foundation is located in Larchmont, New York.Explore more
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Barth Syndrome Foundation News & Media
Barth Syndrome Foundation Calls for Urgent FDA Action Following Elamipretide Delay
BOSTON--(BUSINESS WIRE)--The Barth Syndrome Foundation (BSF), the only patient advocacy organization solely dedicated to saving lives through education, advances in treatments, and finding a cure for Barth syndrome, today issued the following statement in response to learning the U.S. Food and Drug Administration (FDA) will delay its decision on the New Drug Application for elamipretide as a treatment for Barth syndrome. “We are deeply disappointed by this further delay but remain hopeful the FThe Barth Syndrome Foundation Delivers Petition to FDA Advocating for a Fair, Equitable and Appropriate Review of the Only Potential Treatment for Barth Syndrome
In 2 Months, Petition Garnered Nearly 20,000 Signatures from Individuals in All 50 U.S. States BOSTON, Dec. 21, 2023 /PRNewswire/ -- The Barth Syndrome Foundation (BSF), the only patient advocacy organization dedicated to Barth syndrome and saving lives around the world through education,...The Barth Syndrome Foundation Recognizes First Annual Barth Syndrome Awareness Day
BOSTON, April 5, 2023 /PRNewswire/ -- The Barth Syndrome Foundation (BSF), the only patient advocacy organization dedicated to Barth syndrome and saving lives around the world through education, advances in treatment and finding a cure, today recognizes the first annual Barth Syndrome...Scenic Biotech and the Barth Syndrome Foundation Announce Partnership to Explore Genetic Modifiers to a Find Tailored Treatment for the Complex Rare Disease
AMSTERDAM and BOSTON, March 30, 2022 /PRNewswire/ -- Scenic Biotech BV ('Scenic' or 'the Company'), a pioneer in the discovery of genetic modifiers to enable the development of disease modifying therapeutics for rare genetic disorders and other devastating illnesses, and the Barth...
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The Barth Syndrome Foundation is a non-profit that focuses on saving lives through education, advances in treatment, and finding a cure for the syndrome. Founded in 2000, the Barth Syndrome Foundation is located in Larchmont, New York.... Read More
