Saving lives through education, advances in treatment and finding a cure for Barth syndrome
Resources
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.
Brochures and Booklets
General brochure (read version / print version)
Newly diagnosed brochure (read version / print version)
New Teen Booklet (Nov 2020)
Care Plan for school - use the template to personalise your plan
NHS Hospital Management Plan - curently being personalised for each UK patient by the Bristol Barth Syndrome Service
Fact Sheets
Anaesthesia Guidelines for Barth syndrome patients
Understanding Feeding in Barth Syndrome - the Early Years
Healthy Eating Guidelines for teenagers
How to manage episodes of diarrhoea
Growing Up with Barth syndrome
Care Plan for children at school – ideal for school staff & holidays abroad
Transition Resources
NHS Barth Syndrome Service Transition information
Newsletter
Our Barth Syndrome newsletter is published regularly. Sign up now to be added to our newsletter mailing list.
Barth Syndrome Service Winter 2020 Newsletter
Barth Syndrome Service Spring Newsletter
Barth Syndrome UK News Spring 2019
Volume 18, Issue 2 (Winter 2018)
Volume 18, Issue 1 (Spring 2018)
Volume 17, Issue 2 (Winter 2017)
Volume 17, Issue 1 (Spring 2017)
Benefits
You may be entitled to claim benefits which can help offset the costs of caring for a child with special needs. The Barth Syndrome UK 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 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
