Announcing the Launch of the Genetic Cardiomyopathy Registry!
Date: Wednesday, January 22nd, 2025
6:00 – 7:00 PM ET*
Join us for this special webinar to learn about the groundbreaking Genetic Cardiomyopathy Registry!
This webinar will be led by Greg Ruf, Executive Director of the DCM Foundation and GCAC, to explore how this new initiative aims to revolutionize our understanding of inherited cardiomyopathy. The Genetic Cardiomyopathy Registry is 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
- Live Q&A session
Speaker:
Greg Ruf, Executive Director
DCM Foundation & Genetic Cardiomyopathy Awareness Consortium
Greg Ruf is a dedicated advocate for those with Dilated Cardiomyopathy (DCM), a condition he personally understands. Diagnosed in 2014, Greg’s journey included an ICD implant and ultimately a heart transplant in 2021. His experience, including discovering he carries multiple genetic mutations for DCM, fueled his passion to help others.
This led him to found the DCM Foundation in 2017, with the goal of providing education, support, and resources to DCM patients and families. Recognizing the importance of genetic testing, he went on to establish the Genetic Cardiomyopathy Awareness Consortium in 2023 to promote a wider understanding of the genetic factors involved in this disease. Greg’s ultimate hope is to drive research that will lead to preventing and, maybe one day, even reversing DCM in those at risk.
We hope you will join us for this event!
Click HERE to register.