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

Rating: 5 stars  

BSF is the Little Engine that Could! Barth Syndrome affects a very small number of families but the effects can be devastating. BSF serves affected families, supports clinical caregivers with up to date information for this complicated multi-system disorder and has funded almost $4M in competitively awarded research grants in the last 10 years. They run an incredibly well attended International Science, Medicine and Family Conference every two years, the next is coming up in July of this year. They are an invaluable resource for all three groups and a model organization for such a rare disorder!

Role:  Advisor