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

Resources for Families

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

Cornstarch

Determining Absolute Neutrophil Count (ANC)

Diarrhea

Genetics

Heart Failure

Information for Anaesthesiologists and Surgeons taking care of Patients with Barth syndrome 

Medications

Metabolism

Neurology

Neutropenia

Nutrition

Oral Hygiene

Practical Tips for Parents and Affected Individuals

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

 

This 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 sheets.

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) 

 

 

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 Discovery Health Channel continues to air a special on the show Mystery Diagnosis entitled "Parents Searching for Help", a family's struggle to understand the mystery disease that was threatening both of their young sons. To watch, please visit Discovery Health Channel's Mystery Diagnosis website for dates and times of the airing of this episode.

 

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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