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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 affects boys

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

The Barth Syndrome Trust 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

We are delighted to have been given a grant from @JeansforGenes this year, enabling us to run a Family Activity Weekend in 2017.

 

Please sign up to take part in Jeans for Genes Day on 23rd Sep to support this fantastic charity who are helping charities like ours with invaluable funding.

 

Have you signed up to be an organ donor?  Read Laura and Joe's story featured in the Sunday Telegraph

 

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

 

 

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