The DCM Foundation and the Genetic Cardiomyopathy Awareness Consortium are working with multiple cardiomyopathy groups to provide much-needed support for heart failure patients and families.
Patient support resources include:
- Genetic Cardiomyopathy Awareness Consortium
- Cardiomyopathy Support Facebook Groups
- DCM Foundation
- All major cardiomyopathy patient support organizations
Please see below for additional information about these resources.
Stats to Know:
- Close to 50% of cardiomyopathy cases have some type of genetic basis.
- But only about 1% of diagnosed cardiomyopathy patients get genetic testing for their disease.
The DCM Foundation was founded in 2018 with a mission to provide HOPE and support to DCM patients and families with Dilated Cardiomyopathy through education, research, and advocacy.
The DCM Foundation’s mission is being executed through three foundational pillars:
- Information and Education
- Patient and Family Support
- Understanding the Need for Genetic Testing
Cardiomyopathy
Patient Support Organizations
There are various types of cardiomyopathy and several organizations that provide hope and support for these patients. If you or a family member has been diagnosed with cardiomyopathy, the groups below may provide great information and support for you.
Other Cardiomyopathy Patient Support Groups
Gene-Specific Cardiomyopathy Facebook Groups
Please click the link below to view and join a group:
- BAG3 Cardiomyopathy Support
- DSP Cardiomyopathy Support
- Danon Disease (LAMP2) Support
- FLNC Cardiomyopathy Support
- LMNA Cardiomyopathy Support
- MYBPC3 Cardiomyopathy Support
- MYH7 Cardiomyopathy Support
- PKP2 Cardiomyopathy Support
- PLN Cardiomyopathy Support
- RBM20 Cardiomyopathy Support
- TITIN Cardiomyopathy Support
- TNNT2 Cardiomyopathy
- TPM1 Cardiomyopathy Support
*This list is being expanded. If you do not see your gene listed and would like to start a group, please email: info@geneticcardiomyopathy.org