CHD Advocacy

The following websites are NOT owned by or affiliated with Hypoplastic Right Hearts. We share them with you as a courtesy, and we cannot guarantee the accuracy of the information or the status of the websites. Sites denoted with * have provided direct services to our members and are preferred sites. ALWAYS contact your pediatric cardiologist and/or cardio thoracic surgeon/physician when seeking medical advice.

 

Adult Congenital Heart Association

This site offers support and information for adult survivors of CHD. It provides emotional support and involvement opportunities. They hold regional conferences in various parts of the country. There is a membership fee, but they offer a free trial membership. 

American Heart Association

This site includes fundraising and advocacy programs. There is a heart encyclopedia that is very thorough. The site is also available in Spanish.

CHD Quilt Project

This group is making great steps towards raising public consciousness of CHD. They have quilt blocks made in honor of those living with and lost to CHD. It is free to apply for quilt blocks and there is also a store of CHD Quilt products.

The Congenital Heart Information Network

This network does a lot of promoting of CHD awareness and fighting for legislation. There is a fee to join; the fee includes a portrait page, newsletters, and online support groups. 

Kids with Heart

This network does a lot of promoting of CHD awareness and fighting for legislation. There is a fee to join; the fee includes a portrait page, newsletters, and online support groups. 

Medic Alert

Medical emergency awareness products. Some of the products include portable electronic medical files, smaller products for children, beaded bracelets and shoelace versions. The service includes a number that someone can call in an emergency to get medical information quickly. 

Shadow Buddies

These dolls are for boys and girls facing medical issues and hospital stays. They have a variety of conditions represented, including a Heart buddy with chest scar & a mended red heart on the chest. Very reasonably priced. 

US CONGRESS

This link is to a bill in the United States Congress to make CHD awareness week federally recognized.