Your originating diagnosis support (they can still help with so much!)
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 actively works with federal agencies, medical societies, voluntary health organizations, and hospitals nationwide to increase awareness, accelerate research, and advance education on pediatric cardiomyopathy.
CCF understands that nearly one third of cardiomyopathies end up in transplant. They have extensive resources for their transplant families, including an online community, CCF Connect, educational webinars, and free resources covering everything from 504s and IEPs to how to talk to your medical team.
If your child or someone you love has recently been diagnosed with a congenital heart defect (CHD) we are here to help. CHF has a parental resource book, It’s My Heart, that provides information on CHDs in layman’s terms.
Since 2004, Mended Little Hearts has provided patients and families of children with congenital heart disease many services that directly improve their quality of life. They are include peer support, education, hospital outreach, CHD awareness initiatives, online connections and so many more.
From regional to global support groups, from awareness day to remembrance day, from welcome bags to a family conference, Heterotaxy Connection is devoted to helping families affected by Heterotaxy. We encourage the collaboration of families and care teams. Our primary mission is to support, educate, and empower families to navigate this journey.
The Pediatric Congenital Heart Association’s mission is to “Conquer Congenital Heart Disease.” We are accomplishing this through collaboration with patients, parents, providers, and partner organizations to improve quality and outcomes through CHD education, support, research and awareness.
Sisters by Heart provides care packages to make stays in the hospital a little easier. They also provide information and links to many resources to help patients and families better understand HLHS and its consequences. All board members, regional coordinators, and liaisons are parents to children with HLHS and understand the unique position raising a child with a life-long, chronic illness presents.
Help during Transplant
- ACTION LEARNING NETWORK – FaceBook group
- Transplant Kids
- Heart Transplant Families
- PTLD Families – This is a page for families to share stories, lend support and talk about Post Transplant Lymphoproliferative Disease.
- The Berlin Heart Excor Pediatric VAD Families
- Children’s Medical Center Dallas Heart Transplant Support
- Loma Linda Pediatric Heart Transplant Families
If you would like information on forming a Transplant Families support group at your hospital or would like to talk about how we can support your existing group, please click here.
If you want to see your organization listed here, please email firstname.lastname@example.org