Resources for Families

Resources for Parents, Guardians and Families:

By working together with our parent Foundation in the US, and other Barth syndrome affiliates around the world, we are able to provide information that we hope will make a difference for families and affected individuals when dealing with the complex issues that is Barth syndrome.

Videos

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.

Get Connected

We have several options with which families can interact with each other. BSF maintains several private Facebook groups where members of our community can connect, including groups for families who do not speak English. For those not on Facebook, BSF uses additional platforms to give everyone the chance to meet and to find help and understanding. Please contact BSF for more information on how to join our private virtual communities.

General documents (many courtesy of BSF):

The following documents are for information purposes only, and are not intended to serve as medical advice. They are not a substitute for professional care.

Practical Tips

Barth Syndrome
FAQs

Practical Tips

Pill Swallowing
Tips

Practical Tips

Glossary of
Related Terms

Practical Tips

Strategies for
Navigating Life

Practical Tips

Virtual Appointments
Overview & Checklist

Practical Tips

Wallet Card

Practical Tips

Care Plan for School Age Children

Practical Tips

Barth Syndrome Education Guide

Practical Tips

Disease Characteristics & Growth Data from Longitudinal Study

Practical Tips

Healthcare Brochure for Families & Doctors

also, a Video – Educational Issues for a Child 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.

Cardiovascular

Cardiac Testing

Cardiovascular

Heart Failure

Cardiovascular

Left Ventricular
Non-Compaction (LVNC)

Cardiovascular

Heart Failure
Signs & Symptoms

Cardiovascular

Heart Failure
Signs & Symptoms

Cardiovascular

Barth Heart
101

Neutropenia

Neutropenia
Facts

Neutropenia

White Blood
Cell Overview

Neutropenia

Determining Absolute Neutrophil Count (ANC)

Anesthesiology

Anesthesia
Guidelines

Digestion

Diarrhea

Nutrition

Cornstarch

Nutrition

Understanding Feeding

Nutrition

Nutrition Facts

Genetics

Genetics & Inheritance

Genetics

Female Carriers

Dental

Oral Health

Neurology

Neurological Manifestations

Medications

Medication
Fact Sheet

Metabolism

Metabolism
Fact Sheet

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.