Resources for Families

Our affiliate in France has created a number of important resources for children and teenagers affected by Barth syndrome:


A Little Book for Children

Petit Livret

fyrir börn

A Little Book for Teenagers

Our affiliate in the United Kingdom, in conjunction with the Bristol NHS Barth Syndrome Service has also created several important resources for affected individuals:

Living with Barth Syndrome

Healthy Eating For Teenagers

Cardiomyopathy The Facts


Resources for Parents, Guardians and Families:

This link to BSF provides you with a series of videos to introduce you to some people who have gone through the challenges of living with Barth syndrome whether as a parent, grandparent, or carrier. More videos related to Barth syndrome can be viewed here.

Families can also interact through the BSF ‘Family ListServ‘ which is a forum where healthcare providers and families engage in open discussions on the many aspects of this disorder and its treatment. It is an immediate educational resource for families. Please contact BSF for more information on how to join our ListServ.

General documents (many courtesy of BSF):

Growing up with
Barth Syndrome

More specific documents concerning aspects of Barth syndrome
(most courtesy of BSF):

Please remember that these sheets are designed for educational purposes only, and do not replace medical advice from a healthcare professional.






Practical Tips:

Donate please!

The Barth Syndrome Foundation of Canada is a completely volunteer, charitable foundation. We fund critical research and provide support and information to affected individuals, families, and medical professionals.