| The following organizations provide a variety of support, advocacy and educational programs for people who are diagnosed with or at risk of cardiovascular disease. For those who are living with heart disease, these groups may provide valuable resources to help them manage their disease. This directory, however, is not an endorsement of these organizations and the programs they provide. |
Adult Congenital Heart Association (ACHA)The Adult Congenital Heart Association is a national organization dedicated to improving the quality of life and extending the lives of adults with congenital heart defects (CHD). ACHA coordinates a number of activities and initiatives through education, outreach, advocacy and promotion of ACHD research. It also offers forums, newsletters, support groups and other tools for disseminating information to patients and families affected by CHD.
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American Heart Association (AHA)American Heart Association executes a number of advocacy-based initiatives aimed at reducing disability and death from cardiovascular diseases and stroke. Volunteers and staff work to meet these goals through supporting research, providing resources, education and support to those with heart disease or those at risk, and acting as national advocates. The organization also publishes standards for providing basic and advanced life support, including standards for proper performance of cardiopulmonary resuscitation (CPR).
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American Stroke AssociationThe American Stroke Association, an affiliate of the American Heart Association, is solely focused on reducing disability and death from stroke. The association provides information and support to over 1,850 stroke groups and more than 150,000 stroke survivors, caregivers and healthcare professionals throughout the country.
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CongenitalHeartDefects.comCongenitalHeartDefects.com provides information and resources for families and individuals dealing with congenital heart defects. The site’s resources include definitions of medical terms, hospitals caring for people with CHDs, links to support groups, articles regarding CHDs and other educational information for the CHD community.
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Congenital Heart Information Network (C.H.I.N.)The Congenital Heart Information Network provides reliable information, support services and resources to families of children with congenital defects and acquired heart disease, adults with congenital heart defects, and the professionals who work with them. Additional services include financial assistance to families in crisis, funding for local affiliated support groups and sponsorship of an international CHD Awareness Campaign.
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Fibromuscular Dysplasia Society of America (FMDSA)Fibromuscular Dysplasia Society of America is a public health charity working towards better diagnosis and treatment of Fibromuscular Dysplasia (FMD). The organization’s initiatives focus on building awareness of FMD, funding research activities and educating patients and healthcare community about FMD.
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Heart Support of AmericaHeart Support of America provides education, financial assistance, aid and support to heart disease victims and families with limited or depleted financial resources.
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Hypertrophic Cardiomyopathy Association (HCMA)The Hypertrophic Cardiomyopathy Association is a not for profit organization formed in 1996 to provide information and support to those with HCM, their families and the medical community.
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Sudden Arrhythmia Death Syndromes (SADS) FoundationSudden Arrhythmia Death Syndromes Foundation is a nonprofit organization focused on preventing sudden and unexpected cardiac death and providing support to families of children and young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.
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TRIO: Transplant Recipient International OrganizationTRIO is an independent, not-for-profit, international organization committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors.
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*Everist Genomics has no relationship with and does not endorse any of these organizations.
