June 4, 2024 – News from the Global Heart Hub
Global Heart Hub (GHH), the international alliance of heart patient organisations, today launches its 2024 Cardiomyopathy Awareness Campaign, along with cardiomyopathy patient organisations across the globe.
Cardiomyopathy is a disease of the heart muscle that can occur at any age and can be passed down genetically. It affects around 1 in every 250 people worldwide, is an important cause of heart failure and the leading reason for needing a heart transplant. 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.
Think Cardiomyopathy
Led by GHH’s Cardiomyopathy Patient Council which has 24 patient organisation affiliates across 15 countries, this year’s campaign focuses on patient and advocate stories on the impact of cardiomyopathy and the importance of recognising symptoms and knowing your family history.
“Cardiomyopathy is too often underdiagnosed, misdiagnosed or diagnosed too late. It is the predominant cause of sudden cardiac death in people under 35. We want to raise awareness and encourage people to ‘Think Cardiomyopathy’ by helping people recognise the signs and symptoms (which can be subtle) and knowing their family heart history, especially if they have lost a family member too early to heart diseases. Many types of cardiomyopathy are inherited and can impact the risk for other family members,” says Leigh Bell, the new Chair of Global Heart Hub’s Cardiomyopathy Patient Council and President of the Cardiomyopathy Association of Australia.
Learn more about the campaign here: https://globalhearthub.org/think-cardiomyopathy/
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About GHH’s Cardiomyopathy Patient Council
The Cardiomyopathy Patient Council was formed in November 2021 and brings together 24 patient organisations across 15 countries 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.
DCM Foundation
The DCM Foundation is proud to be a Global Heart Hub affiliate.
