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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 mostly 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

Sign up to receive our latest newsletter.  Due out late Nov 2018!

 

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

 

We are funding a new research project into neutropenia, led by Drs Borko Amulic and Colin Steward, University of Bristol

Neutrophil dysfunction in Barth syndrome 

 

New Pill Swallowing Factsheet added to Resources Section

 

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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