We play an active part in the international cardiomyopathy community so that we can be a stronger and more impactful champion for people affected by cardiomyopathy.
This network has now evolved into The Cardiomyopathy Patient Council, part of an international organisation called Global Heart Hub that brings together over 100 patient-led heart disease charities from across the globe. The Cardiomyopathy Council now has 19 member charities from 13 different countries. You can read more about the council here.
As part of this network, we have played our part in two international awareness campaigns and produced international standards in involving people with cardiomyopathy in research activity.
As well as working with an international network of cardiomyopathy charities, we also support a network of healthcare professionals called the International Cardiomyopathy Network (ICoN). ICoN is a newly formed separate charity chaired by Prof. Perry Elliott. ICoN have just started their first main project, developing their cardiomyopathy manifesto setting out a long-term vision for the diagnosis and treatment of cardiomyopathy. ICoN hope to launch their manifesto by the end of 2023.
We have been supporting ICoN by helping them to develop their strategic plan, secure funding and make sure they have the governance in place to be a well run and sustainable charity.
