Finding the right information for your journey is important, and we try to make it as simple as possible. Support and protect yourself, your family and your legacy with the resources available through the patient support organizations listed below:
Finding Expert Care
It is critical to get the right care. Many cardiologists may not be heart failure specialists or equipped to treat genetic cardiomyopathy. At the present time, there is no definitive way to find the “right doctor.” However, if you want to locate a heart failure or cardiomyopathy specialist, our partners at the DCM Foundation have created some resources to help you with this search.
Learn MoreImportant Conversations
Discussing genetic cardiomyopathy with your family or your doctors can be difficult. We want to make sure you feel educated and empowered during these conversations. We have created two information flyers for you to utilize during these conversations. Click here to access our flyer to share with your cardiologist or medical providers. Click here to access our flyer to share with your friends, family and other cardiomyopathy patients or patient groups.
How to Get Involved in Research
There is still so much we do not know about genetic cardiomyopathy. To advance research and potentially find a cure, we need your help. If you have been diagnosed with cardiomyopathy or tested positive for the genetic mutation associated with genetic cardiomyopathy, you have the opportunity to participate in research and clinical studies.
By visiting ClinicalTrials.gov, you can browse hundreds of clinical studies related to cardiomyopathy. When using the portal, make sure to select your location and eligibility criteria to find a study that is relevant to you.
Resources for Genetic Testing and Counseling
Learn more about the important role genetic counselors play in the genetic testing process by visiting the National Society of Genetic Counselors patient website: About Genetic Counselors.
Support For You and Your Family
Children’s Cardiomyopathy Foundation
Connect with a global community of families, physicians and scientists to learn more about pediatric cardiomyopathy.
The Danon Foundation is a trusted resource for people affected by Danon Disease to find and share knowledge and to build community.
Providing support for patients and families with dilated cardiomyopathy through education, research and advocacy.
A key resource for patients diagnosed with hypertrophic cardiomyopathy.
Providing resources and support to heart transplant patients, patients living with heart failure and those waiting for heart transplants.
A resource and support system for all heart patients and families impacted by heart disease, including cardiomyopathy.
Sudden Arrhythmia Death Syndromes (SADS) Foundation
A community of families and medical professionals supporting people with heart arrhythmia conditions.
Offering support and resources for patients or families with a mutation in the Titin gene.
The leading voice for the millions of American women living with or at risk of heart disease.
Living Outside the United States?
Here are organizations that can help support you on your journey.
An alliance of more than 50 cardiomyopathy and heart failure patient organizations from many countries advocating on behalf of those living with or affected by heart disease. Click to see if a support group is available in your country or geographic region.
The only charity in the UK supporting children, young people and adults living with cardiomyopathy, working to provide support and information, campaigning for better access to quality treatment, saving lives through raising awareness and providing hope through shaping research.