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Dilated Cardiomyopathy Resources

The DCM Foundation is proud to be one of several organizations that offers support and resources on cardiovascular disease, including dilated cardiomyopathy to patients, families and health care professionals. Our goal is to continually update this page with additional resources and organizations, so please contact us with questions or requests.

A Resource Guide to “Staying in Care with DCM”

Listing of resources including:

The American Heart Association

The American Heart Association is the nation’s oldest, largest voluntary health organization devoted to fighting cardiovascular diseases and stroke.

Cardiomyopathy UK: The Heart Muscle Charity

Based in the United Kingdom, Cardiomyopathy UK is a charity for supporting and educating people affected by cardiomyopathy. The website has an assortment of cardiomyopathy information, including videos and downloadable resources.

Children’s Cardiomyopathy Foundation

Established in 2002, the Children’s Cardiomyopathy Foundation (CCF) is a 501(c)(3) non-profit organization focused on pediatric cardiomyopathy. The CCF website has resources on research, physician and patient education, advocacy, and patient and family support.

Dilated Cardiomyopathy Research Project

Led by Dr. Ray Hershberger at the Ohio State University, the DCM Research Project aims to advance understanding of the genetics of dilated cardiomyopathy (DCM) by combining clinical and genetic information from a large number of families. The DCM Consortium, a multisite investigator group, is currently enrolling patients with DCM and their first-degree family members in the Precision Medicine Study, a research study funded by the National Institutes of Health.

Financial Support Resources

Global Heart Hub

The Global Heart Hub is the first global non-profit organization established to provide a voice for those affected by cardiovascular disease. GHH is an alliance of heart patient organizations from around the world, aiming to create a unified global voice for those living with or affected by heart disease. Our combined mission is to raise awareness of heart disease and the challenges it presents in everyday life with an aim to increase awareness and understanding of the many heart conditions that exist, improve patient outcomes, enhance quality of life, and optimize longevity and healthy aging.

Heart Failure Society of America

The Heart Failure Society of America (HFSA) is a professional organization for researchers, physicians, nurses and other allied health care professionals with expertise and specialization in heart function, heart failure, and congestive heart failure (CHF). The HFSA website also includes a link to tools, resources and webinars for patients and their families.

Heart Rhythm Society

The Heart Rhythm Society (HRS) is a 501(c)(3) international nonprofit organization for medical, allied health, and science professionals who specialize in cardiac rhythm disorders. Patients and family members can visit the website for cardiac rhythm disorders resources, as well as an option to search for specialists.

Hypertrophic Cardiomyopathy Association

The Hypertrophic Cardiomyopathy Association focuses on serving individuals diagnosed with Hypertrophic Cardiomyopathy (HCM), their families, and health care professionals who treat HCM patients. The HCM Association website has educational resources, as well as information on clinical trials and forums for connecting with others impacted by HCM.

LMNAcardiac.org

Network for LMNA cardiac disease experts and patients.

LMNAcardiac.org is a network with a focus on LMNA cardiac diseases. We provide information and network for both patients and experts to be able to help and speed up research and development.

Mended Hearts and Mended Little Hearts

The largest peer-to-peer heart patient support network in the world, Mended Hearts and Mended Little Hearts are non-profit organizations that provide education, support and hope to patients all types of heart disease and their families. Visit their website for educational resources, discussion groups and to connect with other patients and families affected by heart disease.

National Institutes of Health: National Heart, Lung and Blood Institute

The National Heart, Lung and Blood Institute (NHLBI), part of the National Institutes of Health, focuses on promoting the prevention and treatment of heart, lung, and blood diseases. Among various other health topics, the NHLBI website includes information and publications related to cardiomyopathy, as well as a link to learn about current clinical trials.

National Society of Genetic Counselors

For individuals diagnosed with a genetic form of DCM, the National Society of Genetic Counselors has a website with genetic counseling patient resources, including a feature to search for a genetic counselor.

PLN Foundation

The PLN Foundation is a non-profit organization (ANBI) that was established to put an end to the life-threatening heart muscle disease caused by the PLN mutation. The Foundation was set up by fellow PLN members, family and their loved ones. With your help, it is possible to have research conducted hopefully leading to a cure. In addition, we can make the disease better known, which can save lives. Because the PLN mutation is relatively rare (probably several thousand carriers), only a limited level of research was carried out in the Netherlands. Partly thanks to the PLN Foundation, this disease is now the subject of worldwide attention and research.

SHaRE Cardiomyopathy Registry

The Sarcomeric Human Cardiomyopathy Registry (SHaRe) Cardiomyopathy Registry includes more than 10,500 de-identified Hypertrophic Cardiomyopathy (HCM) patient histories and is being utilized to generate new insights into HCM. In addition, ShaRe is a leading resource for patients seeking more information about HCM and the latest research findings.

Stanford Center for Inherited Cardiovascular Disease

The Stanford Center for Inherited Cardiovascular Disease was the first center in the world to focus on genetic disorders of the heart, including DCM. The website includes information on hereditary heart disease and genetic testing/counseling.

Team Titin

Team Titin is a consortium of Titin genetic scientists and Titin-affected community members. Our goal is to support families and serve as a catalyst for researchers and clinicians to develop a better understanding of Titin-related disorders leading ultimately to a cure.

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