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Privacy Policy

Effective date: March 8, 2023  The Genetic Cardiomyopathy Awareness Consortium (GCAC), led by the DCM [Dilated Cardiomyopathy] Foundation (also “us”, “we”, or “our”), operates the website found at https://www.geneticcardiomyopathy.org  (the “Website”). The statement on this page (our “Privacy Policy”) informs you of our policies and practices regarding the collection, use, and disclosure of personal data and options you have associated with that data when you use our Website. For purposes of this Privacy Policy, and our associated Terms of Use , which govern access to and use of the Website, “you,” “your” and “user(s)” refer to the person(s) accessing or using the Website. Generally, we…

Chat with Your Doctor

Helping You Feel Empowered We want you to feel educated and empowered when talking with your cardiologist or primary care physician, especially as it relates to genetic cardiomyopathy and genetic testing. It may be hard to believe, but your cardiologist or physician may not understand or be aware of the role that genetics plays in cardiomyopathy and how it might affect you and your family. This lack of knowledge about genetics as it relates to cardiomyopathy is one of the biggest factors in the very small percentage of cardiomyopathy patients receiving genetic testing. Remember only 1% of diagnosed cardiomyopathy patients…

Chat with Your Family

Starting the Conversation Because genetic cardiomyopathy is an inherited condition, speaking to your family about genetic testing is one of the most important talks you should have during this process. From learning more about your family’s medical history, to helping a relative understand the impact of genetic testing and early diagnosis, we can help you navigate the conversation.  We have also created an informational flyer that describes genetics and cardiomyopathy and we encourage you to share this with your family, friends and any other cardiomyopathy patients or patient groups. Click here to access this flyer. Tips for Talking With Your…

Genetic Testing FAQs

Frequently Asked Questions  Is the cost of genetic testing covered by insurance? This is a common, logical question. Unfortunately, it’s not possible to simply say “yes” or “no” to this, since every insurance policy is different. It’s also important to know that genetic counseling and genetic testing are billed separately, and coverage of one does not guarantee coverage of the other. With that being said, health insurance usually covers genetic counseling. Insurance companies have different policies, and may cover some tests, but not others. Some cover counseling and testing under specific circumstances, or insist that certain requirements are met before…

Genetic Counseling

Your Partner During Genetic Testing Genetic counselors are trained health professionals who are here to guide and support you before, during and after genetic testing. They are often specialized in certain areas of medicine – such as cardiomyopathy and other cardiovascular diseases – and can meet with you to assess how inherited conditions may impact you and your family. Most people will meet with a genetic counselor face-to-face for one or two visits, possibly more often depending on your needs and situation. You can meet with the genetic counselor alone, with your spouse, a family member or a friend. Not…

After Testing

Understanding Your Genetic Test Results and Next Steps Interpreting Your Results A genetic test result for cardiomyopathy is not just a simple “yes” or “no.” It is crucial to discuss your results with a genetic counselor to fully understand their implications for you and your family. Did You Know? There are many types of genetic mutations that can cause cardiomyopathy. By getting genetic testing, you are helping to advance research into potential treatments and cures for genetic cardiomyopathy. Positive Test Result What It MeansA positive result indicates that you carry a genetic mutation associated with cardiomyopathy. However, it doesn’t guarantee…

Genetic Testing 101

Should I Get Genetic Testing Did you know that children of a parent with cardiomyopathy have a 50% chance of inheriting the condition, even without symptoms? Genetic testing is recommended if you or a family member have cardiomyopathy, especially if the cause is unknown or if it runs in your family. It is important to consider genetic testing if: You or a family member have cardiomyopathy with an unknown cause. You suspect cardiomyopathy runs in your family. Cardiomyopathy of unknown cause is often genetic, and testing can be lifesaving for you and your loved ones. Here are key reasons to…

*Genetic Testing

Archived Webinars

Did you miss a webinar that would be valuable for you or a family member? Please view past GCAC webinar recordings below. Note: To translate a YouTube video into your language, follow these steps to generate automatic subtitles: Select your chosen language from the list of over 100 translation languages Open the YouTube video you want to translate    Click the CC button in the bottom-right corner to turn on closed captions   Select Settings   Choose Auto-translate   Affinia BAG3 DCM – UPBEAT Clinical Trial Please click on this link or the image above to view a recording of this webinar and learn about the launch…

Upcoming Webinars

RNA Approach to Rare Cardiomyopathies Date: August 19, 2026Time: 6:00pm EDT Join Atrium Therapeutics for an introduction to the company and its mission to pioneer targeted RNA delivery directly to the heart, transforming care for people living with rare, life-threatening genetic cardiomyopathies. Hear how Atrium’s lead programs — ATR 1072 for PRKAG2 syndrome and ATR 1086 for PLN cardiomyopathy — are designed to address the underlying genetic drivers of these conditions for the first time. Leading genetic cardiomyopathy RNA researchers will share how RNA therapies can help cardiomyopathy patients. RNA therapies use ribonucleic acid molecules to prevent or treat diseases…