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Contacts

Consultants

Professor Colin Steward
Telephone: 0117 342 8102 / 0117 342 8044

For urgent advice out of hours, Professor Steward can be contacted though Switchboard at Bristol Royal Infirmary on 0117 923 0000.

Dr Alison Hayes
Telephone: 0117 342 8848

Professor Ruth Newbury-Ecob
Telephone: 0117 342 5107

Multidisciplinary team

Members of the team can be contacted either via the telephone numbers or email addresses below or via the website of Patients Know Best (PKB). Access to this for those involved in a patient's care can be organised via Mrs Brenda Harding, Service Administrator.
 

Miss Hayley Smith / Mrs Christina Morris - Barth Syndrome Clinical Nurse Specialists
Telephone: 0117 342 1693 / 0117 342 8077
Email: Hayley.Smith@uhbristol.nhs.uk

Ms Vicki Powers - Principal Clinical Biochemist
Telephone: 0117 342  2590
Email: Victoria.Powers@uhbristol.nhs.uk

Mrs Brenda Harding - Administrator
Telephone: 0117 342 8102
Email: Rachel.Baker@uhbristol.nhs.uk

Dr Vanessa Garratt - Prinicipal Clinical Psychologist
Telephone: 0117 342 8163
Email: Vanessa.Garratt@uhbristol.nhs.uk

Mrs Nicol Clayton - Specialist Dietitian
Telephone: 0117 323 5428
Email: Nicol.Clayton@nbt.nhs.uk 

Useful links

Barth Syndrome Trust (UK)

http://www.barthsyndrome.org.uk/

The Barth Syndrome Trust offers support to patients and their families, access to latest information from around the world, a regular newsletter and invitation to the international conference held every two years in the USA and organised by the Barth Syndrome Foundation (USA).

Barth Syndrome Foundation (USA)

http://www.barthsyndrome.org/

The Barth Syndrome Foundation (BSF) was the first charity established to help patients and families across the World affected by Barth Syndrome. Based in the USA, BSF organises an international conference, which acts as the major focal point for families. BSF and BST fund many research projects looking into the scientific basis and new treatments for the disease. Dr Steward is a member of the Scientific & Medical Advisory Board of BSF.

Cardiomyopathy Association

http://www.cardiomyopathy.org/

The Cardiomyopathy Association helps sufferers, their families, and their medical advisors to best manage the impact of cardiomyopathy.

Children's Heart Federation

http://www.childrens-heart-fed.org.uk/

CHF is a federation of support groups in the UK and Ireland for families with (or expecting) a child with a heart condition.

GUCH

http://www.guch.org.uk/

Grown Up Congenital Heart patients Association (GUCH) provide support for families and patients suffering from cardiomyopathy.

The Miscarriage Association

http://www.miscarriageassociation.org.uk/

The Miscarriage Association acknowledges the distress associated with pregnancy loss and strives to make a positive difference to those whom it affects.

SANDS

http://www.uk-sands.org/

SANDS is an organisation which can offer support to parents whose baby has died during pregnancy or after birth. Many of the staff of SANDS have been through this experience themselves, and are able to offer support and information.