BARTH SYNDROME FOUNDATION INC

Rating: 4.99 stars   68 reviews

Issues: Health, Philanthropy

Location: PO Box 618 Larchmont NY 10538 USA

Mission: The Barth Syndrome Foundation (BSF) is dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome (BTHS).
Results: Our efforts have provided educational resources to transform families from powerless by-standers to empowered advocates.
Geographic areas served: International
Programs: 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.
2014 Top-Rated Nonprofit
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Community Reviews

Rating: 5 stars  

5 people found this review helpful

As a genetics professional, I can atest to the professionalism of this organization. Not only are they a wonderful source of support to patients and families, they are also responsible for encouraging research and excellent clinical care for families. Very few family support groups ever reach this level of excellence.

Will you volunteer or donate to this organization beyond what is required of advisors?

Likely

How much of an impact do you think this organization has?

Life-changing

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

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Rating: 5 stars  

6 people found this review helpful

I have been working with the Barth Syndrome Foundation for several years. Not only is it inspirational to see the families working together for support and of course, their common goal, but the dedication of the Management and the Board in all facets of running the organization is outstanding. Everyone works together tirelessly to achieve their mission.

Will you volunteer or donate to this organization beyond what is required of advisors?

Definitely

How much of an impact do you think this organization has?

A lot

Will you tell others about this organization?

Definitely

When was your last experience with this nonprofit?

2012

Was this review helpful?