Saving lives through education, advances in treatment and finding a cure for Barth syndrome
Resources
Private WhatsApp and other online groups for families
Medical Information
NHS Hospital Management Plan - personalised for each UK patient seen by the Bristol Barth Syndrome Service
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
Genetics and Fertility
Transition
NHS Barth Syndrome Service Transition information
Growing Up with Barth syndrome
Education
Care Plan for school - use the template to personalise your plan
Secondary School Checklist for Parents
Secondary School Mindmap for Children
Pack My Bag Checklist for Children
Newsletter
We send out regular news blasts via email. Sign up now to be added to our newsletter mailing list.
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
