We’re here for everyone affected by cardiomyopathy
We are the specialist national charity for people affected by cardiomyopathy, a condition that affects the heart muscle. Our vision is that everyone affected by cardiomyopathy should live a long and fulfilling life.
Cardiomyopathy is a disease of the heart muscle. It is a group of conditions that affect the structure of the heart and reduce its ability to pump blood around the body. It can have a devastating impact on the lives of people of all ages, including babies, and is usually inherited. Medical experts estimate at least 1 in 250 people (approximately 266,000 people in the UK) have cardiomyopathy.
When people are first diagnosed with cardiomyopathy, they often feel overwhelmed by fear and uncertainty. Coping with the uncertainty of living with a life-threatening condition can put a serious strain on individuals and families. For those living with cardiomyopathy, ongoing symptoms such as shortness of breath, chest pains and fatigue can make everyday life a struggle. With the right information, treatment and support, people with cardiomyopathy can manage their condition with medication and implanted devices. However, quality of life varies greatly, and for some, their symptoms will deteriorate and may lead to them needing a heart transplant.
We are the only charity in the UK supporting children, young people and adults with the life-limiting heart condition cardiomyopathy. We are a community of people affected by cardiomyopathy, medical experts, and charity professionals working to provide support and information, campaigning for better access to quality treatment, saving lives through raising awareness and providing hope through shaping research.
"It was so daunting being diagnosed with dilated cardiomyopathy and heart failure. Cardiomyopathy UK helped my wife and I to understand, accept and live with my condition."
Paul
Our values
Our values underpin everything we do and help us strive towards our vision.
We are:
- Caring: We are devoted to supporting anyone affected by cardiomyopathy and do our best to try and understand each individual’s specific needs and unique perspective. We reach out to anyone affected by cardiomyopathy and ensure that everyone feels welcome.
- Dedicated: We are committed to supporting people across the UK at all stages of their life and we are aware of the importance and urgency of our work.
- Responsive: We reach out to anyone who needs us and ensure that we can adapt our ways of working to be as effective as possible.
- Collaborative: We work with others whenever this benefits those affected by cardiomyopathy.
- Evidence-based: We provide up to date specialist knowledge about cardiomyopathy and ensure that our policies, comments, and decisions are underpinned by robust evidence.
- Realistic: We are honest about the impact that cardiomyopathy can have and the course the condition can take.
- Ambitious: We are ambitious about the impact we want to make and are not afraid to set challenging goals, try new ideas and think big.
