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

UPDATE: CORONAVIRUS/COVID-19

September 2020: The NHS Specialised Service for Barth syndrome has reviewed each case within the UK on an individual basis and has provided tailored advice about going back to school, college, university or work as well as the possibility of needing to reshield if deemed necessary in the future.  We understand that this is a worrying time and that advice will be changing rapidly so please get in touch if you have any questions or need to chat through anything. 

We're working an as international team to share information as it pertains to families affected by Barth syndrome.  Please click here for the latest information.

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.