Cardiomyopathy is a family of diseases that affect the heart muscle: ‘cardio’ means heart, ‘myo’ means muscle and ‘pathy’ means disease. It isn’t a single condition, but a group of conditions that affect the structure of the heart and reduce its ability to pump blood around the body.
Cardiomyopathy can have a number of different causes depending on the type of cardiomyopathy. However, in many cases it is a genetic condition that can be passed down through families.
The Cardiomyopathy Patient Council was formed in November 2021 and brings together patient organisations across the world to increase awareness and understanding of cardiomyopathy. The Patient Council advocates for improved diagnosis of the condition, access to appropriate testing, counselling and treatments. In addition, the Council aims to raise awareness and improve understanding of the disease, with a view to enabling people to live well with the condition.
The Patient Council’s mission is to identify and bring together cardiomyopathy-focussed and patient-led organisations across the world, creating a global alliance and common patient voice that raises awareness and improves diagnosis, management and understanding of cardiomyopathy for patients, caregivers and healthcare providers to ensure the best possible outcomes for those living with the disease.
Webinar: Why Genetics Matter in Cardiomyopathy
Hear from an expert in the field of genetics on why genetics, genetic testing and genetic counselling are important in cardiomyopathies. Learn about the role that genes play in cardiomyopathy and the importance of family history.
Cardiomyopathy Patient Council Priorities:
Activities and advocacy from the Cardiomyopathy Patient Council will seek to address the needs of those affected by cardiomyopathy.
Achievements to date:
Currently, members of the Cardiomyopathy Council include:
Matteo Pinciroli from AICARM Onlus, Italy
Chair, Cardiomyopathy Patient Council
For questions on the Global Heart Hub or how you can join, contact: firstname.lastname@example.org