NHS National Barth Syndrome Service

Welcome to the NHS National Barth Syndrome Service.

We are a nationally commissioned highly specialised service providing national and sometimes international care for children and adults with Barth syndrome. The service was formally established in April 2010, when funding was obtained from NHS England and was the first of its kind in the world. Prior to this a clinic for males affected by Barth syndrome had been run informally in Bristol since 2004 in conjunction with the Barth Syndrome Trust.

The Barth Syndrome Service aims to provide efficient, high quality, multi-disciplinary care for the management of this complex multisystem disease through a team that includes cardiology, haematology, metabolic medicine and genetics with specialist nursing, dietetic, social work, psychology, physiotherapy and occupational therapy care. 

We also work closely with many other services such as speech and language and clinical biochemistry.