Cardiomyopathy Patient Council

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.

Types of cardiomyopathy

The most common types of cardiomyopathy are:

Dilated cardiomyopathy: Your heart’s blood-pumping chambers enlarge (dilate).
Hypertrophic cardiomyopathy: Your heart muscle thickens.
Arrhythmogenic cardiomyopathy (ACM): Disease in your heart muscle causes irregular heart rhythms.

Symptoms

Some people living with cardiomyopathy never have signs or symptoms, while others don’t have signs or symptoms in the early stages of the disease. Common symptoms of cardiomyopathy include shortness of breath; fatigue; swelling in the ankles, feet, legs, abdomen; dizziness, light-headedness; arrhythmias (abnormal heartbeats); chest pain especially after physical exertion; heart murmurs.

Cardiomyopathy Awareness 2024
Think Cardiomyopathy

#ThinkCardiomyopathy | #CardiomyopathyAwareness | #Cardiomyopathy2024 | #ThinkCM

Cardiomyopathy affects around 1 in every 250 people worldwide. It is a disease of the heart muscle that can occur at any age and can be passed down genetically. Often underdiagnosed, misdiagnosed, or diagnosed too late, the consequences of cardiomyopathy can be very serious. If untreated, cardiomyopathy can weaken the heart, leading complications and to more serious conditions.

Learn more about the campaign

Our Mission:

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.

Our Goals:

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

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.

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.

Guiding Principles for Patient Involvement and Engagement in Cardiomyopathy Research

Read the Guiding Principles

Achievements to date:

Since its formation in November 2021, the Cardiomyopathy Patient Council has grown exponentially – and now has 27patient organisations involved from across 16 countries – Australia, Austria, Brazil, Canada, France, Germany, India, Ireland, Italy, Netherlands, New Zealand, Poland, Romania, Spain, Sweden, UK, USA, Wales.
Ran international cardiomyopathy awareness campaigns in 2022 and 2023 aimed at improving awareness, diagnosis and genetic risks associated with cardiomyopathy. In 2023, the campaign exponentially grew achieving over 8.3 million opportunities to see its messages in 10 languages and was shared in over 12 countries.
Developed and launched a collective patient view on the principles for patient involvement and patient engagement in cardiomyopathy research: ‘Guiding Principles for Patient Involvement and Engagement in Cardiomyopathy Research’ – these principles have been endorsed by all patient organisations within the Patient Council and are actively used in discussions with clinical researchers to advocate for patient involvement in all stages of clinical research.
Hosted webinars in cardiomyopathy and genetics in 2022 and 2023, featuring international experts in cardiomyopathy, research and genetics.