Did you miss a webinar that would be valuable for you or a family member? Please view past GCAC webinar recordings below.
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Important Updates and Information on Current DCMF & GCAC Projects
View this webinar to learn about the Genetic Cardiomyopathy Registry, gene specific groups, getting better care, and how you can help support the efforts of the Genetic Cardiomyopathy Consortium.
Topics:
- Getting the best care possible.
- Additional FAQs about the Genetic Cardiomyopathy Registry.
- Gene Specific Groups and their role in supporting patients.
- How you can help us help more patients.
Announcing the Launch of the Genetic Cardiomyopathy Registry
Please click on this link or the image above to view a recording of this webinar and learn about the new Genetic Cardiomyopathy Patient Registry.
View this webinar to learn about the groundbreaking Genetic Cardiomyopathy Registry! Explore how this new initiative aims to revolutionize our understanding of inherited cardiomyopathy. The Genetic Cardiomyopathy Registry was launched in partnership with NORD’s IAMRARE Program. Topics covered will include:
- Overview of genetic cardiomyopathy and its impact
- The urgent need for a dedicated genetic cardiomyopathy registry
- How the registry will collect and utilize data to potentially advance research and improve patient care
- How to participate – criteria for individuals and families with inherited cardiomyopathy
- The future of genetic cardiomyopathy research – potential breakthroughs and treatments
- Q&A session
Questions about this registry? Please email patientquestions@geneticcardiomyopathy.org
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 are spreading the word about how Genetic Cardiomyopathy can save lives – and YOU can help! Learn how to join our Advocacy Army! 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.
Understanding Cardiomyopathy Genetic Therapies – Our Hope for the Future
Cardiomyopathy, Genetics, and YOU
Learn about Getting Better Care, Getting Genetically Tested, and Getting More Involved. Hear from two cardiomyopathy patients and a certified cardiomyopathy genetic counselor. Topics include:
- Getting Better Care: How to find the best doctor(s) for your care and why this is so important
- Getting Genetically Tested: Learn about the process to get genetically tested and what the results mean
- Getting More Involved: Learn how patients can get more involved in the Genetic Cardiomyopathy Awareness campaign
Cardiomyopathy & Genetics – Get the Facts & Save Lives (the Launch of “GCAC”)
Learn about the important role of GENETICS in cardiomyopathy and celebrate the LAUNCH of the Genetic Cardiomyopathy Awareness Consortium (“GCAC”), getting more people genetically tested to save lives and advance therapies! In this webinar, you will hear from other cardiomyopathy patients and learn about:
- The role genetics plays in cardiomyopathy
- How easy and affordable it is to get genetically tested
- How this potentially could save your life and your family’s lives.
Together, we can make a difference!