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

Contact Us

We appreciate your interest in the Barth Syndrome Foundation, and your feedback is important to us. Please consult the following list so that your feedback and questions can be directed to the appropriate person.

Barth Syndrome Foundation
2005 Palmer Avenue #1033
Larchmont, NY  10538
Toll Free: 855-662-2784 or 855-NO-BARTH
Local Line: 914-303-6323
Facsimile: 518-213-4061



Executive Director

Lindsay B. Groff, MBA
Telephone: 855-662-2784 or 855-NO-BARTH (Ext. 702)
Email: Contact Us


Family Services & Awareness

Shelley Bowen
Director, Family Services & Awareness
Telephone: 855-662-2784 or 855-NO-BARTH (Ext. 701)
Email: Contact Us 
Skype Name: shelley_bowen  

Science & Research

Matthew J. Toth, PhD
Science Director
Telephone: 855-662-2784 or 855-NO-BARTH (Ext. 705)
Email: Contact Us
Skype Name: matt_bsf  


General Inquiries / Publications / Technology

Lynda Sedefian
Executive Assistant
Telephone: 855-662-2784 or 855-NO-BARTH (Ext. 703)
Email: Contact Us

Regional Affiliates

Barth Syndrome Trust (UK & Europe)

Michaela Damin, Chair
1 The Vikings
S051 5RG
United Kingdom
Telephone: +44 1794 518 785
Email: Contact Us
Website: www.barthsyndrome.org.uk

NHS National Barth Syndrome Service: Barth Syndrome Clinic
Website: uhbristol.nhs.uk/barthsyndromeservice


Barth Syndrome Foundation of Canada

Susan Hone, President
162 Guelph Street, Suite 115
Georgetown, ON L7G 5X7
Telephone: 1-888-732-9458 or 905-873-2391
Email: Contact Us
Website: www.barthsyndrome.ca

Association Barth France

Florence Mannes, Chair
13 rue de la Terrasse
92150 Suresnes
Telephone: +33 1 45 00 86 12
Email: Contact Us
Website: http://www.syndromedebarth.fr


Associazione Barth Italia

Paola Cazzaniga, President
Piazza Carrobiolo 5
20900 Monza
Telephone: +390392023777
Email: info@barthitalia.org
Website: http://www.barthitalia.org

Last Updated: 2017-03-20

Barth Syndrome International


Families of Barth


Meet Wyatt

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