“Saving lives through education,
   advances in treatment, and
finding a cure for Barth syndrome”

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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.

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

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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.


Conference

Our International Barth Syndrome 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 2016 Conference is scheduled for July 18-23, 2016 at the Hilton Clearwater Beach Hotel located in Clearwater, Florida.


Community Calendar

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

 


Local Support & Affiliates

Barth Syndrome Foundation
2005 Palmer Avenue #1033
Larchmont, New York  10538
Phone: 855-662-2784 or 855-NO-BARTH
Local Line: 914-303-6323
Fax: 518-213-4061
Email: bsfinfo@barthsyndrome.org
Website: www.barthsyndrome.org

Barth Syndrome Trust (UK & Europe)
1 The Vikings
Romsey
Hampshire
S051 5RG
United Kingdom
Phone: +44 1794 518 785
Email: Contact Us 
Website: www.barthsyndrome.org.uk

NHS Barth Syndrome Service

Barth Syndrome Foundation of Canada
162 Guelph Street, Suite 115
Georgetown, ON L7G 5X7
Canada
Phone: 1-888-732-9458 or 905-873-2391
Email: Contact Us
Website: http://www.barthsyndrome.ca

Association Barth France
13 rue de la Terrasse
92150 Suresnes
France
Phone: +33 1 45 00 86 12
Email: Contact Us
Website: http://www.barthfrance.com/

Associazione Barth Italia
Piazza Carrobiolo 5
20900 Monza
Italy
Telephone: 3391127252
Fax: 0392023777
Email: info@barthitalia.org
Website: http://www.barthitalia.org

 

Last Updated: 2016-10-24

Barth Syndrome International

 

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