BARTH SYNDROME FOUNDATION INC Overview
Geographic areas served: International
BSF sponsors a competitive research grant program to facilitate advances in Barth syndrome (BTHS) understanding and to encourage the discovery of new treatments.
We are interested in providing “seed grant funding” to young investigators as well as attracting experienced investigators new to the field of BTHS basic science or clinical research. We anticipate that these funds will be used for the testing of initial hypotheses and the collection of preliminary data leading to successful long-term funding by the National Institutes of Health (NIH) and other major granting institutions around the world.
The Barth Syndrome Foundation (BSF) is dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome (BTHS).
Our efforts have provided educational resources to transform families from powerless by-standers to empowered advocates.
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BSF is both as a family, loving, helpful and supporting, and as a huge source of information. Even if our son is affected by a rare disease, we never feel alone, and BSF give us the strenght to live with Barth Syndrome, and give us hope that the future of our kids will be brighter... more »
Life before BSF can be characterized by one word, isolation. Isolation from informed doctors and researchers, from necessary services, from other affected boys and families, and from support of any nature. Life since BSF can be characterized by one word, teamwork. Teamwork amongst doctors and ... more »
BSF has made such a huge difference in our life when our grand-son was diagnosed with Barth Syndrome when he was 3 months old. We were overwhelmed with questions nobody could answer and we found in BSF a wonderful community of parents and experts offering knowledge, advice and support. The ... more »