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

Resources for Families

Resources for Affected Individuals:

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

For Children: A Little Book for Children (English); Petit Livret Explicatif (French); Bókarkorn fyrir börn (Icelandic)

For Teenagers: A Little Book for Teenagers  It is also available as a short video in French here.

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

Growing up with Barth syndromeLiving with Barth SyndromeHealthy Eating for TeenagersCardiomyopathy - the Facts; and Barth Genetics.

 

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):

 

Glossary of Related Terms

Barth Syndrome FAQs; FAQs in Spanish Preguntas frecuentes (FAQ) respecto al síndrome de Barth

Wallet card (when travelling) and Emergency Medical Information should be filled in and kept it by the phone.

Advocacy

Care Plan for School Age Children

Barth syndrome Education Guide from Barth Syndrome UK  and a video called Educational Issues for a Child with Barth syndrome from BSF.

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

Professional Healthcare Brochure: a brochure for both families and doctors. If you would like a printed copy, please contact us.

Transitions: information related to issues and considerations transitioning from childhood to adolescence to adulthood. 

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.


Digestion:

 

Genetics:

 

Medical:


Neutropenia:

 

Nutrition:


Practical Tips:



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.

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86102 2002 RR0001

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