Our Mission:
To improve awareness, diagnosis and management of cardiomyopathy

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.

Our Goals:

  • Identify and bring together cardiomyopathy-focussed and patient-led organisations across the world to create a global alliance and common patient voice.

  • Share ideas, best practices, patient experiences and resources within the network.

  • Raise awareness and understanding of cardiomyopathy by communicating up-to-date information on the condition, treatment guidelines, patient experiences and research.

  • Shape, promote and support international research.

Activities and advocacy from the Cardiomyopathy Patient Council will seek to address the needs of those affected by cardiomyopathy.

  • Highlight the signs and symptoms of cardiomyopathy and the importance of family history of heart disease to any clinical consultation.

  • Ensure greater use of diagnostic testing and quicker referrals to specialist care.

  • Improve access to appropriate screening and genetic testing as well as genetic counselling for patients and their families.

  • Provide appropriate educational materials to enable people to effectively self monitor vital signs and symptoms.

  • Help people with cardiomyopathy to adapt their lifestyles and live well.

Currently, members of the Cardiomyopathy Patient Council include:

Join the Council:



Joel Rose

Chair, Cardiomyopathy Patient Council