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realTAZ

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1 reviews

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

Rating: 5 stars  

I am a scientist who has worked on Barth syndrome research since 2000 when BSF was started and it is amazing what they have accomplished since then. The biennial Conference brings together families, scientists and clinicians creating an opportunity for studies of the syndrome, opportunities for the families to meet and exchange experiences, opportunities for scientific collaborations. In between, one needs only to look at the BSF website to see all the services they offer to families and clinicians. All this effort is culminating in some currently ongoing clinical trials of therapies. I am headed to the 2018 Conference with great anticipation

Role:  Professional with expertise in this field