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Thank You for Joining the Advocacy Army!

Spread Our Message and Help Save Lives! Thank you for helping us spread the word. Together, we can make a difference. We will continue to add materials to this tool kit to help you tell our story and save lives. See below for general instructions about how to use the items in this Tool Kit. Please also check your email for a thank you letter with instructions for use of the Advocacy Army Tool Kit. (If you didn’t receive an email, please check your spam folder.) Specific instructions for the use of each kind of marketing piece are included within the…

Join the Fight

Join our Advocacy Army and Help Save Lives! Every day, people with cardiomyopathy are in a battle for their lives. The Genetic Cardiomyopathy Awareness Consortium is on a mission to increase awareness and to get more cardiomyopathy patients and family members genetically tested, which will help save lives and advance genetic research and therapies. By becoming an advocate for Genetic Cardiomyopathy, you can help us reach more people, share important information, and bring us closer to a future free from this devastating disease. Please join our team by sharing the information we have provided in our Advocacy Army Tool Kit.…

Genetics 101

On this page Overview Cause Detection Genetics & Cardiomyopathy Summary Let’s talk about GENES What are they and what do they do? The human body is made of trillions of tiny building blocks called cells. Almost all cells contain a nucleus, which is the control center of the cell. The nucleus contains our genetic material, called deoxyribonucleic acid or DNA, which is organized into pairs of thread-like structures called chromosomes. Passed from parents to children, DNA contains the specific instructions that make each person unique. A gene is usually a short section of DNA that contains instructions for making a…

Gene Therapy Basics

On this page Overview How Does Gene Therapy Work? Types of Gene Therapy Antibody Testing Potential Benefits Potential Risks Existing Gene Therapies for Other Diseases The Future of Gene Therapy Misconceptions & Questions Summary Getting to the Root Cause of Cardiomyopathy Gene therapy holds the potential to treat the root cause of cardiomyopathy by targeting the genes that can lead to the condition. The future of gene therapy offers hope for those affected by cardiomyopathy, beyond just symptom management. What is Gene Therapy? Gene therapy is a way of treating or preventing conditions caused by genetic mutations. Think of genes…

Types of Cardiomyopathy

Five Main Types of Cardiomyopathy Dilated Cardiomyopathy (DCM) Dilated Cardiomyopathy (DCM) is found most frequently in adults under 50 years old. DCM causes the heart muscle to stretch and become thin, which makes it difficult for the heart to pump blood, leading to heart failure. In close to half of all DCM cases, the cause is unknown and most likely has a genetic basis or is inherited. In some cases, DCM can also cause problems with the heart’s electrical system which may interfere with the heart’s performance and can cause dangerous arrhythmias. To learn more about DCM, visit our partners…

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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…

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