Cardiomyopathy Awareness Week
This week marks Cardiomyopathy Awareness Week 2023, a time when the Global Heart Hub, in collaboration with major cardiomyopathy charity groups worldwide, sheds light on the importance of genetic testing in cardiomyopathy care. Cardiomyopathy, a condition that affects the heart muscle, can be serious but can be managed well.
Understanding the genetic basis of the disease is crucial for individual patients, as it helps explain why their hearts aren't functioning optimally and provides insights into how cardiomyopathy might impact their families.
Research's Vital Role
Research has revolutionised our understanding of cardiomyopathy. By generously donating their genetic samples and time to research, patients play an essential role in advancing treatments and diagnoses. More research is needed to unravel the complete genetic landscape of cardiomyopathy, and every contribution helps pave the way toward better outcomes for patients.
Introducing the Heart Hive
Since 2019, the Heart Hive has been dedicated to connecting patients with increased research opportunities. As an online platform, the Heart Hive welcomes individuals with cardiomyopathy, myocarditis, or a family history of cardiomyopathy to register. By sharing information about their diagnosis, participants are matched with relevant research studies or clinical trials. The Heart Hive empowers individuals to decide whom to share their data with and which studies they wish to participate in, putting patients in control of their own health journey.
The Heart Hive Renovation
Currently undergoing a renovation, the Heart Hive is in the process of moving to a new platform. However, you can join our waiting list to be the first to know when we launch our new and improved website. Stay connected with us on social media platforms such as Twitter, Facebook, or Instagram for updates and news about our progress.
Find Out More
To delve deeper into the genetics of cardiomyopathy, watch a short video featuring heart hive founder, Prof. James Ware. For more information about the Heart Hive and its initiatives, please visit our website homepage
Together, let's raise awareness, support research, and improve the lives of individuals affected by cardiomyopathy. Join us in our mission to advance understanding and find better solutions for this condition.