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

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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 - personalised for each UK patient seen by the Bristol Barth Syndrome Service

Anaesthesia Guidelines for Barth syndrome patients

Cardiomyopathy/Heart failure

Neutropenia in Barth syndrome 

Understanding Feeding in Barth Syndrome - the Early Years

Healthy Eating Guidelines for teenagers 

Preventing low blood sugar during night time and preventing the loss of muscle mass – using cornstarch/cornflour before bed

How to manage episodes of diarrhoea

Pill Swallowing

 

Genetics and Fertility

Genetics of Barth syndrome

Fertility information

 

Transition

NHS Barth Syndrome Service Transition information

Growing Up with Barth syndrome

 

Education

Education Guide

Care Plan for school - use the template to personalise your plan

A4 Summary Sheet for Teachers

 

 

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

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Contact us

Medical emergency or just need to talk?

 

Get in touch!

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Barth Syndrome Trust graphic
 
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