Connect with Community

Sign up for E-News

Let’s stay in touch. Sign up for E-News and we will keep you up-to-date on all things the Barth Syndrome Foundation (BSF) is doing. We promise never to share your e-mail address with others.

Social Media

You can also keep up with the BSF, Barth syndrome news, BSF programs and more by finding us on your favorite social networks:

Online Community

A click of a send button connects affected families from all over the world. Our ListServ is a private, password and firewall protected cyber community of experts and families. Separate lists are also available for the scientific and medical community, affected individuals, siblings and BSF volunteers. When you become a member of our ListServ you will also have access to previously archived topics.

Family ListServ — The 'Family ListServ' is a forum where healthcare providers and families engage in open discussions on the many aspects of this disorder and its treatment. It is an immediate educational resource for families.

Docs ListServ — The 'Docs ListServ' is an ongoing forum where members of our international Scientific and Medical Advisory Board, clinicians and researchers collaborate, ask questions and exchange the latest information.

Please contact Family Services for more information on how to join our ListServ.

International Scientific, Medical & Family Conference

Our International Scientific, Medical & Family Conference, held every two years, is really two simultaneous meetings. One meeting brings together doctors and scientists involved in the many aspects of the disorder to discuss the latest underlying scientific developments and clinical insights. It is a unique collaboration that accelerates advances in understanding and treatment. The other is a family meeting in which the latest information is discussed with families. Free clinics are also held enabling families to consult with medical experts from around the world. In addition, the clinics offer families the opportunity to provide important clinical data and biological samples to the Barth Syndrome Registry and Repository (BRR).

We are pleased to announce that BSF's 2018 Conference is scheduled for July 16-21, 2018 at the Hilton Clearwater Beach Hotel located in Clearwater Beach, FL.

Community Calendar

Find out what's happening in BSF's community!

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