Listed below are several organizations working to support patients and families facing congenital heart defect diagnoses, along with funding research and developments in the field.
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.
Heart - Lucile Packard Foundation for Children's Health
The Lucile Packard Foundation is based at Stanford Hospital in California. This foundation is working to achieve global advancements in treatment of SVD and is researching better treatment options that combine engineering and science. Donations are also used to improve patient care, coordination, and experience, especially for families with children that have special health care needs.
Heartgift provides life-saving treatment and surgeries to children with congenital heart defects around the world. Through medical mission trips and partnerships with children’s hospitals globally, they are able to assist children in developing countries without access to proper treatment.
The Children's Heart Foundation
The Children’s Heart Foundation is working to advance the diagnosis, treatment, and prevention of congenital heart defects through research funding. So far, The Children’s Heart Foundation has funded nearly $18 million of CHD research and scientific collaborations to help drive improvements in survival rates, longevity, and quality of life for individuals living with CHDs.
Through long-term partnerships with local hospitals, Children’s Heart Link is building and improving local-level capacity to support complex cardiac care for pediatric patients across the globe. They are also optimizing patient care through training and education models, advocating for better access to care with governments and stakeholders, and working to create sustainable access to care through centers of excellence.
Congenital Heart Defect Coalition
The Congenital Heart Defect Coalition (CHDC) is a volunteer-based nonprofit committed to improving the quality of life for children and adults affected by congenital heart defects (CHD). With a mission to unite and support the CHD community, CHDC increases awareness, raises funds for critical medical research, and spreads a message of hope.
A Giving Heart Foundation (AGHF) is driving groundbreaking research to transform the lives of children with congenital heart defects (CHD). They are funding efforts led by leading pediatric specialists to develop a first-of-its-kind dissolvable stent designed specifically for children. This innovative solution aims to eliminate the need for open-heart surgery. AGHF is deeply committed to enhancing the quality of life for children with CHD and their families.
