The Children’s Cardiomyopathy Foundation (CCF) is a national, non-profit organization focused on pediatric cardiomyopathy, a chronic disease of the heart muscle. CCF is dedicated to accelerating the search for cures while improving diagnosis, treatment, and quality of life for children affected by cardiomyopathy. CCF offers a variety of ways for families affected by pediatric cardiomyopathy to access information and resources, as well as share experience and provide support to one another. They offer a complete listing of CCF support services and resources in English and Spanish.
Mended Little Hearts is a program of the Mended Hearts, Inc. Mended Little Hearts has provided families and caregivers of children with heart defects and heart disease an outlet through which they can find answers, education, resources and access to local-based peer-to-peer support – building hope for the future. With Mended Little Hearts, children with congenital heart defects (CHD) and their families find strength and understanding from those who share the same experience.
Mended Little HeartGuide – Mended Little Hearts and St.Jude Medical partnered to create a one-of-a-kind, digital resource guide for parents and caregivers of children with congenital heart disease. Medical professionals and parents worked together on this guide to provide accurate and honest information that addresses the tough feelings, questions and concerns parents and caregivers may have. Their hope is that this guide empowers families to feel confident as they care for their child with congenital heart disease. This is also available online in a digital format and in Spanish.
SMS provides care coordination services; support for child development and neuromotor clinics; nutritional and feeding/swallowing consultation; psychological and physical therapy services. Special Medical Services provides medical and financial services to children with special health care needs (CSHCN). Children with special health care needs are those who have, or are at increased risk for, chronic physical, developmental, behavioral, or emotional conditions, which require health and related services of a type beyond that, required by children generally.
Kids with Heart parents of children with congenital heart disorders a place to find information about specific disorders and other support resources. Kids With Heart offers a wonderful online support group, parent to parent services and more.
Little Hearts, Inc. is a national organization providing support, education, resources, networking, and hope to families affected by congenital heart defects.