Resources

We have a number of fact sheets to help young people and their families understand more about Barth syndrome. Links to these can be found below:

Growing up with Barth syndrome 

Living with Barth syndrome 

Cardiomyopathy in Barth syndrome

Neutropenia in Barth syndrome 

Genetics of Barth Syndrome

Healthy Eating for Teenagers with Barth Syndrome 

 

Useful websites

Barth Syndrome Trust (UK): http://www.barthsyndrome.org.uk/

The Barth Syndrome Trust offers support to patients and their families, access to the latest information from around the world, a regular newsletter and an invitation to the international conference held     every two years in the USA and organised by the Barth Syndrome Foundation (USA).  BST and BSF fund many research projects looking into the scientific basis and new treatments for the disease.

 

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.

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: https://chfed.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.

Somerville Heart Foundation: https://sfhearts.org.uk/

Somerville Heart Foundation is the only UK-wide charity dedicated to supporting young people and adults born with all forms of heart conditions, known as Congenital Heart Disease.

The Miscarriage Association: https://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: https://www.sands.org.uk/

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.

 

Information for clinicians

The below posters have been developed to help raise awareness of Barth syndrome amongst medical professionals and relevant interested groups.  These highlight common presenting symptoms within each area and give details of how to access advice and testing.

If you have any suggestions for improvement or for other specialist areas where teaching material would be of value, please contact the team on BarthSyndromeService@uhbw.nhs.uk.

For GENETICS teams: /files/nhs-ubht/Barth%20Syndrome%20Genetics%20Poster%20January%202011.pdf

For PATHOLOGY teams: /files/nhs-ubht/Barth%20Syndrome%20Pathology%20Poster%20March%202011.pdf

For CARDIOLOGY teams: /files/nhs-ubht/Barth%20Syndrome%20Cardiology%20Poster%20March%202011.pdf