Children & Teen Resources

Band-Aides & Blackboards
A site developed by a nurse that allows kids to share their medical story, suggests things to do while in the hospital and offers kid articles on how to deal with chronic illness and common medical problems.

Genes Are Us
A site that offers teaching resources and a film library to help young people learn more about genetic disorders and how they affect children’s lives.

A web community for teenagers with various forms and degrees of cardiomyopathy.

An online resource for kids to help each other deal with grief and loss. Includes an art gallery and an email support group.

Kids As Self Advocates
Kids As Self Advocates (KASA) is a national grassroots project created by youth with disabilities.

Provides engaging animated videos explaining how the heart works, and various heart related procedures.

Choosing a Physician, Hospital or Insurance

Stay Informed
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Unite and Fight
Connect with hundreds of other families struggling with this disease through our online member community.
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