Resources

The Children’s Heart Foundation
(http://www.childrensheartfoundation.org/)
Research, parental support and information for families of children with congenital heart disease. The Children’s Heart Foundation has a great pdf book that can be downloaded or read online. It is titled, “It’s My Heart” and is a must read for all our CHD parents. It describes heart defects in an easy to understand way.
(www.childrensheartfoundation.org/publications/its-my-heart/english)

The Congenital Heart Information Network
(http://tchin.org/)
This is a great resource area for reading on different types of CHD; they also have listings for other support groups and networks.

The CHD Quilt Project
(http://www.chdquilt.org/)

Mended Little Hearts
(www.mlh.org)
Nationwide support and advocacy group for families and adults with pediatric heart disease.

What Did You Say?
(www.congenitalheartdefects.com/medtermdefs.html)
Congenital heart disease medical terminology.

Congenital Heart Bookstore
(www.kidswithheart.org/store.html)
Collection of books pertinent to families facing congenital heart disease.

Saving Little Hearts
(www.savinglittlehearts.com)
Provides care packages for children undergoing open heart surgery.

Mended Hearts of Suffolk

Hypoplastic Right Hearts
(http://www.hypoplasticrighthearts.org/)
Online message board forum and information portal for families who have any kind of hypoplastic right heart syndrome diagnosis.

Hypoplastic Left Hearts
(http://hlhsinfo.homestead.com/)
Information portal for families with diagnosis of hypoplastic left heart syndrome.

Spencer’s Fund
(http://tchin.org/spencersfund/)
Provides financial assistance for families with children with congenital heart disease.

Jamie’s Heart Foundation
(http://www.jamiesheart.org/whatWeDo.html)
Financial assistance for CHD related expenses for families.

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