NHS Specialised Service

1-2 Mar 2011: Bi-annual National Barth Syndrome Clinic - Bristol Royal Hospital for Children

Please join us for a specialised clinic for all those affected by Barth syndrome. Families will have the opportunity to meet the leading experts in the disorder as well as other affected families from all over the UK. This is an informal, friendly and informative meeting and everyone is welcome. For more information and to confirm your attendance, please contact us.

New Nationally Commissioned (NSS) Barth Syndrome Service

from 1 April 2010

Bristol Royal Hospital for Children – the UK NHS national centre of excellence for Barth syndrome

Important information for all patients and doctors

This is a national, multidisciplinary service for all Barth Syndrome patients in the UK and Europe run by a team who are experts in the condition. The service includes:

● Diagnosis of new patients as well as retrospective analysis (from Guthrie spots, stored DNA or cell lines) for families with histories of male cardiac death, or recurrent male foetal loss

● Initial patient assessment and advice within 2 weeks of diagnosis

● “One Stop” Clinic twice yearly: March & September each year (to include cardiology, haematology, genetics, dietetics, gastroenterology, metabolic issues, endocrinology, psychology, physiotherapy, occupational therapy)

● A dedicated Clinical Nurse Specialist

● See the NHS website for additional information.

● Barth Syndrome Service Brochure – print version

● Awareness Poster

If you are a parent of a child with Barth syndrome or a doctor who would like to arrange a Free Test for Barth syndrome or are treating a patient who is eligible for referral to this service, please contact us for further details.

Please note that European patients outside the UK need to be in possession of a valid S2 form (formerly E112) to access this service.

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