Congenital Heart Defects

Getting Support

Connect with a Patient or Caregiver Like You

As part of the CardioSmart Initiative, the American College of Cardiology has partnered with Mended Hearts to expand a network of cardiovascular patient support and care. Mended Hearts is a peer support organization made up of patients, families and caregivers that have in some way been impacted by cardiovascular disease.

Volunteers of Mended Hearts draw on personal experiences as they help other patients and families navigate the emotional journey of heart disease. Through in-hospital visits, community support groups, health education workshops and more, Mended Hearts gives peace of mind to patients and families by connecting them with others facing a similar journey.

To connect with a Mended Hearts representative contact the national office at 1-888-432-7899 or

The FH Foundation offers educational resources for both patients and health care providers to help people understand their familial hypercholesterolemia diagnosis and find the support they need to effectively manage their own health and learn about the importance of screening their family members for this inherited disorder.  FH Foundation research contributes to the understanding of FH so that families have the chance to fight this life threatening, yet treatable, condition.

The FH Foundation is a non-profit patient-centered research and advocacy organization whose mission is to save lives by increasing the rate of early diagnosis and encouraging proactive treatment of FH in order to prevent heart disease.

For more information visit the FH Foundation at or email

Support for Women with Heart Disease

WomenHeart: The National Coalition for Women with Heart Disease

WomenHeart is a national, patient-centered organization that serves women living with heart disease. The coalition provides patients with free support services through in-person meetings at local hospitals and via email, online and telephone. WomenHeart aims to help patients become more adherent to their medications while complying with healthy lifestyle changes and encouraging improved communication with family, peers and physicians about their disease.

Heart patients interested in locating WomenHeart support services can visit

Support for Congenital Heart Defects

Drawing on the same peer support model, Mended Little Hearts connects parents and families of children with congenital heart defects. Mended Little Hearts provides invaluable peer-to-peer interaction and a forum for families to forge personal connections with each other and the medical community. With Mended Little Hearts, families are no longer alone.

To connect with a Mended Little Hearts family in your community, visit

The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” They are founded on the key purpose to be the resounding voice of the pediatric patient population. PCHA works passionately through collaboration in education, research, and advocacy to reduce the impact of congenital heart disease while striving to realize a world free from it.

To connect with the Pediatric Congenital Heart Association, please visit

Sisters by heart logo

Sisters by Heart is a national nonprofit founded by parents of children with Hypoplastic Left Heart Syndrome (HLHS). Sisters by Heart provides hope, empowerment and support to parents of the newly-diagnosed. Through their unique network, they connect a vast majority of families affected by HLHS. Sisters by Heart also dedicates significant resources working with cardiac centers and clinicians across the U.S. to improve quality of care and outcomes for infants and children living with single ventricle defects.

To connect with Sisters by Heart, please visit