Our Little Book for Children is a simple, beautifully illustrated guide to Barth syndrome, aimed at young children

Litla bókin okkar fyrir börn er einföld, fallega myndskreytt leiðsögn um Barthheilkenni sem er ætlað ungum börnum

Our Little Book for Teenagers is a simple, beautifully illustrated guide to Barth syndrome, aimed at teenagers with Barth syndrome.

Anesthesia and sedation considerations for healthcare providers who are involved in the care of Barth syndrome patients.

A one page overview of the cardiac aspects of Barth syndrome.

Overview of common tests and procedures for the person who has Barth syndrome

A brief description of heart failure

A diagram of the heart with a brief description of left-sided heart failure versus right-sided heart failure

A table of the various signs and symptoms one might experience with heart failure as a baby, a child, teen and adult

A summary about inheritance patterns and reproduction options for carriers of Barth syndrome.

A simple overview about how to calculate an absolute neutrophil count (ANC) developed by the Severe Chronic Neutropenia International Registry (SCNIR)

Diarrhea can be very dangerous for anyone of any age who has Barth syndrome. This fact sheet provides facts that one should know about managing diarrhea in Barth syndrome.

Information about mouth ulcers, gingivitis associated with neutropenia, oral hygiene care, tooth eruption, and orthodontic considerations.

A primer about the genetics and inheritance of Barth syndrome.

A health professionals guide to better understand feeding issues among children with Barth syndrome during their early years of life.
Updated March 2019

Barth Syndrome Registry: Distinguishing disease characteristics and growth data from a longitudinal study

Overview of neutropenia in Barth syndrome, tips for diagnosis, and neutropenia management. Reviewed by BSF SMAB clinical advisors.

A primer about the life cycle and function of white blood cells particularly the neutrophil.

Nutrition is a complicated challenge with Barth syndrome. This document provides a brief overview of some of the feeding issues people with BTHS encounter throughout their lives.

Guidance for administering cornstarch at bedtime / overnight fasting.

This document provides useful tips and instruction to help children learn how to swallow pills.

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

Overview with a tip sheet for making the most of your telehealth appointment