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

 

Barth syndrome is a rare genetic condition that usually affects boys and men (though we do have girls within our group)

Main symptoms:

  • Heart muscle weakness (cardiomyopathy)
  • Neutropenia (lack of white blood cells needed to fight bacterial infections)
  • Fatigue and general muscle weakness
  • Growth/feeding issues

Barth Syndrome UK is a well-established community of families, medical professionals, scientists, donors and volunteers with links to other affiliates all around the world.  We provide the most comprehensive source of reliable and current information about this condition and we invite you to visit our pages to find the information you seek.

 

We are dedicated to saving lives through education, advances in treatment, and finding a cure for Barth syndrome - a sometimes fatal, often debilitating genetic disease.

 

Working together we are making a difference in the lives of children and their families. One day there will be a cure; please join us and help us make that day come sooner.

 

Meet our families

 

Joes story

Children in Need  - Meet Joe

 

Narrated by Martin Freeman (Hobbit, Sherlock)

Latest News

The psychosocial impact of Barth syndrome... Read Dr Aidan Searle's 'Self-regulation in Barth syndrome', a UK perspective https://rdcu.be/cyFRV. With special thanks to the UK Barth families who took part and to NIHR EME Program and BSF

 

CARDIOMAN clinical trial results summary now available

 

2022 Grant Program now open for applications

 

Meet Barth dad Sam who found that walking has helped him during the hardest, darkest times after the loss of his son Josh.

 

Barth Syndrome UK funds new research project for 2021

 

New Transition resource from Bristol Service

 

New Teen Booklet out now!

 

Download and personalise your School Care Plan

 

Our Little Book for Children is a simple, beautifully illustrated guide to Barth syndrome, aimed at young children

 

Please sign up to our newsletter

 

CARDIOMAN clinical trial - Completed (awaiting results)

 

New NHS Hospital Management Plan for Barth syndrome patients

 

ICD Code for Barth Syndrome ICD-10 E7871/E78.71 

 

 

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