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

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Barth Syndrome Trust image


Private email forum for families

Our listserv is a private, password and firewall- protected cyber community of experts and families. Join to 'talk' to other affected families and medical experts and ask your questions.  You can also access many topics in our archives.



Fact Sheets


Our Barth Syndrome newsletter is published twice a year and contains stories from all around the world.  Click on the last few editions for full copies and please contact us if you would like to be added to our mailing list.


Volume 17, Issue 2 (Winter 2017)
Volume 17, Issue 1 (Spring 2017)
Volume 16, Issue 2 (Winter 2016)
Volume 16, Issue 1 (Summer 2016)
All Newsletters



You may be entitled to claim benefits which can help offset the costs of caring for a child with special needs.  The Barth Syndrome Trust has teamed up with Contact a Family, the leading UK charity providing information for parents who have a child with a disability.

Please visit Contact a Family for details of the following:


•             Disability Living Allowance and other benefits

•             Tax Credits

•             Special Educational Needs Advice Service

•             Short Breaks


There is also a wealth of other information on the site, much of which is directly relevant to parents of a child with Barth syndrome. Check out their “Cash Counts” area, Contact a Family’s one stop shop for benefits advice and money saving tips.



We are working on creating some specific resources for young people with Barth syndrome who are moving towards adulthood so please check back soon.


In the meantime, please take a look at The Transition Information Network website which has information for young people, families and professionals.
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Barth Syndrome Trust graphic
Barth Syndrome Trust graphic
Barth Syndrome Trust graphic