You are not alone.
We connect patients and families with trusted organizations that provide education, community, and support for those living with cardiomyopathy. These groups offer valuable resources, shared experiences, and opportunities to learn from others on a similar journey.
Below is a list of patient organizations providing support, information, and resources to cardiomyopathy patients, their families, and healthcare providers.
- American Association of Heart Failure Nurses (AAHFN) AAHFN provides a patient education website designed to serve as a resource for patients, families, and caregivers seeking an in-depth understanding of heart failure.
- The American Heart Association The nation’s oldest and largest voluntary health organization devoted to fighting cardiovascular diseases and stroke. The website includes extensive patient education resources on cardiomyopathy and related heart conditions.
- Cardiomyopathy UK A United Kingdom–based charity supporting and educating people affected by cardiomyopathy. The website includes condition-specific information, videos, and downloadable resources.
- Children’s Cardiomyopathy Foundation A 501(c)(3) nonprofit organization focused on pediatric cardiomyopathy. Resources include research updates, physician and patient education, advocacy, and family support.
- Danon Foundation Provides information, advocacy, and support for individuals and families affected by Danon disease, a rare genetic condition.
- Genetic Cardiomyopathy Awareness Consortium This global awareness campaign was launched in 2023 by multiple cardiomyopathy patient organizations to promote genetic testing for cardiomyopathy patients and family members. The campaign aims to increase awareness, encourage family screening, and advance research.
- Global Heart Hub The first global nonprofit alliance of heart patient organizations. Global Heart Hub works to create a unified international voice for people living with cardiovascular disease and to improve awareness, outcomes, enhance quality of life, and optimize longevity and healthy aging.
- The Hypertrophic Cardiomyopathy Association (HCMA) Provides support, education, and advocacy for individuals and families affected by hypertrophic cardiomyopathy (HCM).
- Heart Brothers A nonprofit organization dedicated to supporting heart failure patients and their families. Provides education, resources, and guidance for living with heart failure, mechanical circulatory support, and heart transplantation.
- HeartCharged Ending preventable deaths from sudden cardiac arrest and undiagnosed heart conditions, and providing patient-to-patient support.
- Heart Rhythm Society An international nonprofit organization for professionals specializing in heart rhythm disorders. The website includes patient resources and a specialist search tool.
- Heart Transplant Guides Provides peer-to-peer support for individuals preparing for a heart transplant and for those in post-transplant recovery. Connects patients with “Heart Transplant Guides,” individuals who have undergone a transplant, and offer guidance through the process.
- LMNAcardiac.org A network focused on LMNA-related cardiac diseases, providing information and collaboration opportunities for patients, families, clinicians, and researchers.
- Let’s Talk PPCM Provides education, support networks, and advocacy to promote early detection, accurate diagnosis, and awareness of peripartum cardiomyopathy (PPCM).
- Mended Hearts and Mended Little Hearts A peer-to-peer support network for heart patients and families affected by heart disease, including cardiomyopathy. Offers educational resources and community connection.
- National Institutes of Health: National Heart, Lung and Blood Institute Part of the National Institutes of Health, NHLBI focuses on the prevention and treatment of heart, lung, and blood diseases. The website includes information on cardiomyopathy and links to clinical trials.
- National Society of Genetic Counselors Provides patient education resources and a searchable directory to help individuals find a certified genetic counselor.
- National Organization for Rare Disorders (NORD) Provides education, advocacy, and patient assistance resources for individuals living with rare diseases, including genetic cardiomyopathies.
- PLN Foundation A nonprofit organization established to support individuals affected by the PLN mutation. The Foundation promotes research, awareness, and global collaboration to advance treatment and understanding of PLN-related cardiomyopathy.
- SADS Foundation The Sudden Arrhythmia Death Syndromes Foundation supports families and works to prevent sudden death due to inherited heart rhythm conditions.
- Stanford Center for Inherited Cardiovascular Disease A specialized center focused on genetic heart conditions, including dilated cardiomyopathy (DCM). The website provides information on inherited heart disease and genetic testing.
- Sudden Cardiac Arrest Foundation Works to raise public awareness of sudden cardiac arrest and promote initiatives that help save lives through education and research.
- Team Titin A collaboration between Titin researchers and families affected by TTN-related cardiomyopathy, working to improve understanding and accelerate research.
- WomenHeart A national patient-centered organization dedicated to supporting women living with heart disease through education, advocacy, and community support. WomenHeart is the first and only national patient-centered organization dedicated to serving women with heart disease.