These Facebook groups are for people with DCM and their loved ones. The groups offer support, information, and a place to connect with others who understand what you’re going through: “Dilated Cardiomyopathy” private group for DCM patients and family members “Dilated Cardiomyopathy” public group for DCM patients and family members
Read moreCardiomyopathy can have many different names and causes. At the Genetic CardioMYopathy Awareness Consortium, our focus is on cardiomyopathy that is inherited, or passed from one family member to the other. There are 55-75 genes that are known to cause genetic-based cardiomyopathy. Close to half of all cardiomyopathy cases have some type of genetic basis or are inherited but only a very small percentage of diagnosed cardiomyopathy patients are ever asked to get genetically tested by their cardiologists even though their governing organizations recommend genetic testing. If you are interested in exploring genetic testing go to Genetic Testing To learn…
Read moreLiving with cardiomyopathy can be difficult at times, but it’s important to know that you are not alone. If you or a loved one has been diagnosed with cardiomyopathy, it can be helpful to connect with others who are going through similar experiences. There are many online resources that can assist Genetic Cardiomyopathy patients and their family members to feel more hopeful and supported through this journey. Please explore the support resources below and click on the links provided to learn more about each resource. You can also donate directly to your gene specific group to help further the education…
Read moreEmailThis field is for validation purposes and should be left unchanged.Name(Required) First Last Email(Required) Enter Email Confirm Email PhoneComments(Required)Please let us know what's on your mind. Have a question for us? Ask away. Please send me future updates from the Genetic Cardiomyopathy Awareness Consortium.
Read moreInformed Consent Form (ICF)An ICF is a document that provides potential participants with key information about the registry. This document helps potential participants to make an informed decision whether to join or not. Information will include topics such as: the risks and benefits of the research project, use of data, and participant privacy. If they choose to join the study, participants are required to electronically sign the ICF. This indicates that they agree to the terms as described before entering data into the registry or responding to surveys. Institutional Review Board (IRB)An IRB is a board formally designated by an…
Read more1. What is the Genetic Cardiomyopathy Registry? The Genetic Cardiomyopathy Registry (GCR) is a secure online research database that collects information from individuals with or suspected of having genetic cardiomyopathy. This valuable data helps researchers better understand these conditions, leading to improved diagnosis, treatment, and prevention methods. The GCR is an online platform collecting data from individuals with genetic cardiomyopathies to advance research and improve patient care. 2 . What is the purpose of the Genetic Cardiomyopathy Registry? The purpose of the Genetic Cardiomyopathy Registry is to bring the Cardiomyopathy community together and collect data. Some of the goals of…
Read moreIt 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 More
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