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Enhancing the lives and outcomes
of Canadian individuals and families
affected by Barth syndrome."

Resources for Families

Our affiliate in France created a booklet to explain Barth syndrome to children; translated into English by the UK affiliate, we have found this to be a valuable tool for children at the primary school level: A Little Book for Children


Petit Livret Explicatif (French)

Bókarkorn fyrir börn (Icelandic)


We encourage you to print out this wallet card and keep it handy when travelling, as well, print and fill out this Emergency Medical Information sheet and keep it by the phone.

The following are educational documents concerning various aspects of Barth syndrome.

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



Barth Syndrome FAQs

Care Plan for School Age Children


 For the following group of fact sheets, see BSF



Determining Absolute Neutrophil Count (ANC)




Glossary of Related Terms


Heart Failure






Oral Hygiene

Pill Swallowing Tips 

Practical Tips for Parents and Affected Individuals

Strategies for navigating Life for Parents and Siblings of. boys with Barth Syndrome

(by Mary Keeley, M.S., Lisa Merlo, PhD, & Eric Storch, PhD)



For information in Spanish, please see BSF Español


The following brochure has been very well received by both families and doctors. If you would like a printed copy, please contact us.

Professional Healthcare Brochure


Our affiliate, the Barth Syndrome Trust in the UK, in conjunction with the Bristol NHS Barth Syndrome Service have created the following fact sheets.

Growing up with Barth syndrome 

Barth syndrome Education Guide 

Healthy Eating for Teenagers

Cardiomyopathy the Facts

Living with Barth Syndrome 

Barth Genetics 


From the Barth Syndrome Registry 

Barth Syndrome Growth Charts (Distinguishing disease characteristics and growth data from a longitudinal study) 



Privacy and Disclaimer

Barth Syndrome Foundation of Canada does not endorse any drugs, tests, or treatments that we may report.

This website is for informational purposes, always check with your physician before adopting any medical treatment.

Registered Charity Number:
86102 2002 RR0001

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