Sisters by Heart is run by parent volunteers who have children with single ventricle defects (SVDs). With this first-hand experience, they are striving to form connections amongst the SVD community and provide help through online support and local resources. Families affected by SVDs are encouraged to register with their online support group “Linked by Heart” and connect with their regional facebook groups. They also provide care packages to families who have recently received an SVD diagnosis.
Tiny Tickers has a family support page with various resources for all affected by a congenital heart defect diagnosis. There are educational resources such as support packs and booklets, financial support information, and recommendations for items to include in your hospital bag. There are also resources such as virtual peer support sessions and groups, family support webinars, family experience videos, and psychological guidance for siblings.
Adult Congenital Heart Association
The Adult Congenital Heart Association has a page dedicated to resources for those affected by congenital heart defects (CHDs). Their ACHA resource page offers valuable tools, such as brochures and guidebooks on the heart and different CHDs in both English and Spanish. They also provide information on navigating the social and economic impacts of CHD on patients and families, such as social security disability, health insurance, and exercise.
On the homepage of the CHD Care Compass, there are pages with support resources and advice for every stage of your CHD journey, from prenatal testing and early care to surgery, recovery, and long-term management. CHD Care Compass also has a list of online forums and groups to connect parents with children with CHDs. There is also advice on managing the transition from hospital to home for patients with CHD and how to manage the impacts on family life.
American Heart Association Network
The American Heart Association Support Network will connect people to conversations by topic: heart rhythm disorders, cardiomyopathy, caregiving, congenital heart defects, emotional health, heart, pregnancy & women’s health, stroke, and ways to be involved.
Congenital Heart Public Health Consortium
Congenital Heart Public Health Consortium is a unique collaboration that brings together families, experts, and organizations to address congenital heart defects through surveillance, research, education, health promotion, and policy development.
Conquering CHD's mission is to “Conquer Congenital Heart Disease.” They are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research, and awareness.
Mended Little Hearts, a branch of the Mended Hearts organization supports children with CHDs and their families. Through their website, families can connect, share experiences, and find encouragement through support groups and visiting programs. Their mission is to provide a strong community for those navigating the challenges of CHD.
