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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

Death By Chocolate - join this fun filled online Murder Mystery, starts 3rd May 2022. Buy your tickets here


Barth Syndrome UK co-funds important new research into neutropenia in Barth syndrome


The psychosocial impact of Barth syndrome... Read Dr Aidan Searle's 'Self-regulation in Barth syndrome', a UK perspective 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


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


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


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New NHS Hospital Management Plan for Barth syndrome patients


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



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