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68 Reviews
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July 31, 2014
1 person found this review helpful

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July 31, 2014
1 person found this review helpful

As a physician-scientist working in the field, I cannot say enough good things about the Barth Syndrome Foundation. Like many worthy non-profit organizations, they focus on a rare but devastating disease. Like many non-profits, they raise money for research and heighten awareness. Like many other non-profits, they are a tight-knit community. What I think sets the BSF apart is the biennial International Scientific, Medical, and Family Conference, which brings together not only scientists, doctors, and other healthcare professionals, but families and patients too. The conference then takes on a personal quality. The science and medicine of the disease we're discussing are intertwined with the personal side, at this truly inspiring conference.
The BSF website is also exemplary.

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How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2014

November 15, 2012
4 people found this review helpful

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November 15, 2012
4 people found this review helpful

I became involved with the Barth Syndrome Foundation when I attended their first meeting in 2000. What a long way they have come in just 12 years! They provide substantial support for research aimed at understanding the condition, they provide amazing support to the affected and their families, they host biennial Family and Scientific conferences, there is a web site full of information, a listserv for families and another one for doctors and scientists, there are volunteer experts that can be consulted, families can exchange experiences and advice regarding this variable disease -- and there is the welcoming warmth, the belonging to a superfamily, the link across oceans and continents. In short, BSF is wonderful!

More feedback...

How does this organization compare with others in the same sector?

Very Well

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

Life-changing

Will you recommend this organization to others?

Definitely

When was your last experience with this nonprofit?

2012

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