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)
- 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
Children in Need - Meet Joe
Narrated by Martin Freeman (Hobbit, Sherlock)
Who knew taking part in a clinical trial could be so much fun?! Watch our CARDIOMAN video created by the talented Oliver Baxter-Smith. (Sign up for free access to Vimeo to watch)
In March 2023, Jeans for Genes awarded BS UK a generous grant to create a peer-to-peer support network for young adults and adults with Barth syndrome!
A HUGE shout out to Barratt Homes Eastern Counties who raised an INCREDIBLE £42 000 for our charity!
Barth Syndrome UK co-funds important new research into neutropenia in Barth syndrome
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