Navigating Diagnosis with Your Child’s Healthcare Team
Finding an explanation for your child’s health problem can take time. Here are tips on how to work with your child’s healthcare team during that process.
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About Kids GI
Learn more about Kids GI Disorders such as symptoms, treatment, and personal stories from others.
Softy the Poop: Helping Families Talk About Poop by Thomas DuHamel
A child-friendly book designed to help families open up about constipation and encourage healthy habits.
GIKids
A website providing resources for parents and caregivers about gastrointestinal health and disorders in children.
What is Croup? Symptoms, Treatment, and When to Worry
Croup is a common childhood condition that can cause some worrisome symptoms. Get tips for treating croup at home and signs you should seek medical care.
Explaining Death to a Child
Explaining death to a child is not an easy task, especially when the death was of a close friend or family member.
ALD Alliance
The ALD Alliance exists to cure, support and advocate for ALD as well as to advocate for nationwide newborn screening.
Global Leukodystrophy Initiative Consortium (GLIA)
Children’s Hospital of Philadelphia (CHOP) is leading an initiative to establish a multi-institutional program to advance research and treatment across the leukodystrophies.
KrabbeConnect
The idea for KrabbeConnect originated from the 2015 Family Centered-Krabbe Translational Research Network meeting (FC-KTRN), a collaborative meeting between researchers and families to aid in solving the uncertainties of Krabbe disease. Through KrabbeConnect, the foundation provides a platform to amplify the voice of patients, aiding researchers and drug developers in accelerating research for better treatments for Krabbe disease.
Hunter's Hope Foundation
Hunter’s Hope Foundation was established to address the acute need for information and research with respect to Krabbe Disease and related Leukodystrophies. In addition, our mission is to strive to support and encourage those afflicted and their families as they struggle to endure, adjust and cope with the demands of these fatal illnesses.