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Contacts

For enquiries please call the Barth Syndrome Administrator on 0117 3428102 or the Clinical Nurse Specialist on 07795507294, who can direct your call to the appropriate members of the team. 

To contact a member of the team directly, please use the contact details below.

Contact

 

Telephone Number

Email

Metabolic

Dr Germaine Pierre

Dr Effie Chronopoulou

0117 342 8102 (Admin)

barthsyndromeservice@uhbristol.nhs.uk

 

Cardiology

Dr Guido Pieles

Dr Alison Hayes

0117 342 5102 (Admin)

barthsyndromeservice@uhbristol.nhs.uk

 

Haematology

Dr Adam Gassas

0117 342 8102 (Admin)

barthsyndromeservice@uhbristol.nhs.uk

 

Barth Syndrome Clinical Nurse Specialist

Hayley Smith

0117 342 1693 No voicemail 07795 507294 With voicemail

Hayley.smith@uhbristol.nhs.uk

Genetics

Sarah Buston

0117 342 5107 / 3425329

Sarah.buston@uhbristol.nhs.uk

Ann.oliver@uhbristol.nhs.uk

Dietetics

Abbie Robotham

0117 342 8802

Abigail.robotham@uhbristol.nhs.uk

 

Psychology

Vanessa Garrett

0117 342 8169

Vanessa.garratt@uhbristol.nhs.uk

 

Occupational Therapy

Dani Goodman

0117 342 8429

Dani.goodman@uhbristol.nhs.uk

 

Physiotherapy

Hannah Bassett

0117 342 8525

Hannah.bassett@uhbristol.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.