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

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

Guidance for administering cornstarch at bedtime / overnight fasting.

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.

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

A primer about the genetics and inheritance of Barth syndrome.

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

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

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

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)