Barth Syndrome Foundation

Voluntary Health Agency Member

Address: 
2005 Palmer Avenue
#1033
Larchmont, NY 10538
Phone: 
855-622-2784
Fax: 
518-213-4061

The Barth Syndrome Foundation (BSF) is an international non-profit organization that provides information, resources and services for healthcare professionals and families worldwide. BSF's mission is Saving lives through education, advances in treatment, and finding a cure for Barth syndrome.

BSF's website (www.barthsyndrome.org) contains the most up-to-date information, including a comprehensive on-line library which serves both the medical community and affected families.

BSF's International Scientific/Medical & Family Conference, held every two years, brings together doctors and scientists in a unique collaboration to better understand and treat the disorder. A simultaneous Family Meeting includes free clinics which enable families to consult with medical experts from around the world. The clinics also offer families the opportunity to provide important clinical data to support the Barth Syndrome Medical Database and BioRepository.  

BSF sponsors a competitive research grant program to increase the understanding of Barth syndrome and to encourage the discovery of new treatments.

This organization has completed the National Health Council’s Standards of Excellence Certification Program and meets the highest standards of accountability, ethical practice, organizational effectiveness, and good public stewardship. 

To learn more, click on the links below.