Resources
Private WhatsApp and other online groups for families
Join to 'talk' to other affected families and medical experts and ask your questions. Contact us for more details.
Brochures and Booklets
General brochure
A little book for children
Teen Booklet
Medical Information
NHS Hospital Management Plan
Anaesthesia Guidelines for Barth syndrome patients
Cardiomyopathy/Heart failure
Neutropenia in Barth syndrome
Understanding Feeding in Barth Syndrome - the Early Years
Healthy Eating Guidelines
Preventing low blood sugar during night time and preventing the loss of muscle mass
How to manage episodes of diarrhoea
Pill Swallowing
Transition
NHS Barth Syndrome Service Transition information
Growing Up with Barth syndrome
Education
Education Guide
Care Plan for school
A4 Summary Sheet for Teachers
Secondary School Checklist for Parents
Secondary School Mindmap for Children
Pack My Bag Checklist for Children
Other Useful Links
Barth Syndrome Foundation US
NHS Specialised Service for Barth Syndrome
Arrhythmia Alliance
Cardiac Risk in the Young (CRY)
Cardiomyopathy Association
Children's Heart Federation
Contact
Legal & Policies
Bristol Clinic Travel Expenses
Code of Fundraising
Confidentiality
Copyright
Data Breach
Data Retention
IT Access
Privacy
Safeguarding
Social Media
Subject Access Request
Trustee Code of Conduct
Volunteer Policy
Whistleblowing
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