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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…

Become an Advocate

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 that 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

You Get Your Results. Now What? A positive or negative test result is not a simple “yes” or “no” when it comes to diagnosing genetic cardiomyopathy. That’s why it’s important to talk to a genetic counselor, so you can best understand how your results may impact 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. Testing Positive If you receive a positive genetic test result, it does not guarantee that you will develop…

Getting Tested

A Simple, Affordable Process Genetic testing is quickly becoming the standard for helping diagnose inherited cardiomyopathy. Not only is it cost-effective, but it can also help patients find out more about their diagnosis and identify family members who may be at risk of developing the same condition, even if they don’t have any symptoms. In most cases, insurance will cover genetic testing, but we encourage you to check your policy for a full breakdown of your coverage plan before getting genetic testing. Getting testing for cardiomyopathy is done by a simple saliva sample. In partnership with the Dilated Cardiomyopathy (DCM) Foundation, we’ve…

Testing

Archived Webinars

Did you miss a webinar that would be valuable for your or a family member? Please view past GCAC webinar recordings below: Gene Therapy Clinical Trials for Genetic Cardiomyopathies What is a gene therapy clinical trial and how does it differ from other trials Phases of gene therapy trials in the US Potential considerations and support How to identify a clinical trial that’s right for you Overview of Lexeo’s gene therapy program for PKP2-arrhythmogenic cardiomyopathy Live Q&A Guest Speaker: Nilomi Shah – Medical Affairs and Patient Engagement Lead from Lexeo Therapeutics Help Us Save Lives – Become an Advocate We…

Upcoming Webinars

Gene Therapy Clinical Trials for Genetic Cardiomyopathies – Overview and Considerations Date: Wednesday, June 19th, 2024 6:00 – 7:00 PM ET* Join us to learn more about: What is a gene therapy clinical trial and how does it differ from other trials Phases of gene therapy trials in the US Potential Considerations & Support How to identify a clinical trial that’s right for you Overview of Lexeo’s gene therapy program for PKP2-arrhythmogenic cardiomyopathy Live Q&A Speaker: Nilomi Shah, Medical Affairs and Patient Engagement Lead – Lexeo Therapeutics Nilomi Shah is the Medical Affairs and Patient Engagement Lead at Lexeo Therapeutics.…