My Nonprofit Reviews
Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA
It is absolutely stunning what BSF manages to do in so many areas. Financing and coordinating scientific research, bringing patients with Barth syndrome together (online and face to face), supplying information for patients, families and physicians. And the bi-annual conferences bring all these topics together. No other patient group has been able to do any of this on such large skill, let alone for a rare disease.
If I had to make changes to this organization, I would...
Absolutely nothing. They know very well what they are doing.
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