Future Events

Sep 2010 : Annual National Barth Syndrome Clinic - Bristol Royal Hospital for Children

Please join us for a specialized 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 e-mail: info@barthsyndrome.org.uk.

Sep 2010: Family Gathering - Bristol

This year we’ll be hosting a fun day for the entire family. More details to follow…

New Nationally Commissioned (NSCAG) 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 annually – 24-25th September 2010 (to include cardiology, haematology, genetics, dietetics, gastroenterology, metabolic issues, endocrinology, physiotherapy, occupational therapy)

● A dedicated Clinical Nurse Specialist

If you are a parent of a child with Barth syndrome or a doctor who would like to arrange a 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 E112 card to access this service.

Information

2010 International Scientific, Medical and Family Conference
Panama City Beach, Florida U.S.A. - July 26-30, 2010

Our International Barth Syndrome Conference, held every two years, is really two simultaneous meetings. One meeting brings together doctors and scientists involved in the many aspects of the disorder to discuss the latest underlying scientific developments and clinical insights. It is a unique collaboration that accelerates advances in understanding and treatment. The other is a family meeting in which the latest information is discussed with families. Free clinics are also held enabling families to consult with medical experts from around the world.

DVD sets of BSF's 2008 Conference are available to purchase. Each session contains nearly 12 hours of indexed and chaptered presentations from leading physicians, scientists, researchers, therapists and parents. You can purchase the Family Sessions, Scientific & Medical Sessions, or both. Each set comes with a BONUS DVD that includes interviews with some of the boys and young men affected by this disorder. To purchase your DVDs, please download the 2008 Conference DVD Order Form and fax to the number provided on the form.

BST Medical Brochure (English) – BST Medical Brochure (print version)

BST Family Brochure (English) - BST Family Brochure (print version)

BST Newly Diagnosed Family Brochure (English) -

BST Newly Diagnosed Family Brochure (print version)

Informationsbroschüre für die Öffentlichkeit

Care Plan Template

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Last updated 19-Mar-10