Barth Syndrome Resources & Publications
 Welcome to the resource page, the official source of BSF resources, educational products, and publications. These pages are for those seeking information on Barth syndrome.
This site strives to do three things: put a bit of humanity and understanding to this disease, gather Barth syndrome information and resources in one place, and present information in an easy to understand and logical format.
The following are some of the many benefits of joining BSF or one of our affiliates. Membership, at no cost, is open to families affected by Barth syndrome, medical professionals and volunteers.
Bibliography
A comprehensive on-line library, as it relates to Barth syndrome and the various components of this multi-system disorde, which serves both the medical community and affected families.
International Scientific, Medical & Family 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 Medical Database and Biorepository.
ListServs
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.
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.
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.
Separate lists are also available for affected individuals, siblings and BSF volunteers. When you become a member of our Listserv you will also have access to previously archived topics. Please contact Family Services for more information on how to join one of our ListServs.
Medical Database & BioRepository
Through an agreement with the University of Florida and with BSF´s sponsorship, the Barth Syndrome Medical Database and Biorepository has been established to promote the collection and sharing of clinical histories and biological samples (including cell lines) of BTHS patients. The Medical Database and Biorepository are available to any qualified researcher, worldwide, who is interested in studying BTHS. This is a powerful and useful tool to researchers, physicians and Barth families. For more information contact Family Services!
Newsletter
Our newsletter (Barth Syndrome Journal) is published twice a year to inform families, researchers, and the medical community about advances in programs and research sponsored by the Foundation. Current events and newsworthy topics relevant to Barth syndrome are also featured.
Research Grant Program
BSF and its affiliates sponsor a competitive research grant program to facilitate advances in Barth syndrome (BTHS) understanding and to encourage the discovery of new treatments. Grant applications are evaluated by BSF's international Scientific and Medical Advisory Board, with input from expert outside reviewers.
Peer Family Support
BSF's Peer Family Support is a community of parents, grandparents, wives, children, siblings and extended families. Regardless of how you are related to someone with Barth syndrome, you are not alone. We wish to learn from your experiences and share our experiences and resources with you. Please contact Family Services!
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The links below provide methods to access and acquire both electronic and print media. Additionally, the Search function above provides basic and advanced search capabilities for published products available on our website.
 To view these PDFs you will need Adobe Acrobat Reader. If you do not have the plug-in you can get it here.
| Newsletters |
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| Volume 10, Issue 1 (Summer 2010) |
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| Volume 9, Issue 1 (Spring 2009) |
Volume 9, Issue 2 (Winter 2010) |
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Volume 8, Issue 2 (Winter 2008)
Volume 8, Issue 1 (Spring 2008) |
Volume 4, Issue 2 (Winter 2004)
Volume 4, Issue 1 (Spring 2004) |
Volume 7, Issue 2 (Winter 2007)
Volume 7, Issue 1 (Spring 2007) |
Volume 3, Issue 1 (Spring 2003)
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Volume 6, Issue 2 (Winter 2006)
Volume 6, Issue 1 (Spring 2006) |
Volume 2, Issue 2 (Winter 2002)
Volume 2, Issue 1 (Spring 2002) |
Volume 5, Issue 2 (Winter 2005)
Volume 5, Issue 1 (Spring 2005) |
Volume 1, Issue 1 (Winter 2001) |
Conference Programs
Education
In the fall of 2003, the Barth Syndrome Foundation committed resources to helping its families cope with the significant educational challenges faced by students with Barth syndrome.
With parents and educators working together and with these handbooks and the resources they offer, BSF hopes to give both families and educators what they need to help guide a student with Barth syndrome through his education with the care and support that every individual deserves.
Strategies of Educational Advocacy for a Child Living with Barth Syndrome ~ A Parent´s Handbook
Strategies of Educational Advocacy for a Child Living with Barth Syndrome ~ An Educator´s Handbook
If you are interested in obtaining a copy of these handbooks, please contact Family Services.
Media
Video Coverage of BSF's 2008, 2006 and 2004 International Scientific/Medical & Family Conferences are available in DVD sets upon request. Each session contains nearly 12 hours of indexed and chaptered presentations from leadying physicians, scientists, researchers, therapists and parents. You can purchase the Family Sessions, Scientific & Medical Sessions, or both. Each set comes with a BONUS DVD that includes interviews with some of the boys and young men affected by this disorder.
To purchase your DVDs, please contact Family Services.
Discovery Health Channel continues to air a special on Mystery Diagnosis entitled "Parents Searching for Help", a family's struggle to understand the mystery disease that was threatening both of their young sons. Please visit Discovery Health Channel's Mystery Diagnosis website for dates and times of the airing of this episode.
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