My Nonprofit Reviews

Barth Syndrome foundation is a wonderful organization dedicated to those affected by Barth Syndrome. It has fostered a community of hope and caring as well as a place to share knowledge about this Syndrome.

BSF has lead the way in advancing research and advocating for treatments for Barth Syndrome. BSF Funds multiple peer reviewed research grants each year to learn more about this disorder. BSF is working with the FDA regarding the challenges of drug approval in ultra rare disorders.

Before the Foundation I had never met anyone else with Barth Syndrome. This group Welcomed me in with open arms, sharing information and advice. Words cannot describe how grateful I am for all this group has given me.

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