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Barhtmom1963

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1 reviews

Review for Barth Syndrome Foundation Inc, Larchmont, NY, USA

Rating: 5 stars  

Barth syndrome Foundation is an amazing organization. BSF helps to fund research for a disease that is not readily known to the general public or to most medical professionals. It reaches out to the families of affected individuals and their families, it helps people to understand the disease and offers support to the families. They have set up a wonderful network for families, affected individuals,and professionals to support, inform and encourage each other. Every two years they organize a conference for the families, medical professionals, and researchers to come together and help each other in finding a cure for this rare disease. This group has helped ease the burden of the families affected

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