Global Heart Hub and the Genetic Cardiomyopathy Awareness Consortium urge people to 'Think Cardiomyopathy'
GHH, the international alliance of heart patient organizations, along with GCAC urge people to “Think Cardiomyopathy.”
We are excited to support this important campaign raising awareness about cardiomyopathy, an often undiagnosed and devastating disease affecting tens-of-millions of people globally.”
DUBLIN, OHIO, UNITED STATES, August 6, 2024 /EINPresswire.com/ -- Global Heart Hub (GHH), the international alliance of heart patient organizations, along with the Genetic Cardiomyopathy1 Awareness Consortium (GCAC), launched its 2024 Cardiomyopathy Awareness Campaign - urging people to “Think Cardiomyopathy.”— Greg Ruf, Executive Director GCAC
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 (32 million) worldwide, is an important cause of heart failure, and is the leading reason for needing a heart transplant. Often under-diagnosed, misdiagnosed, or diagnosed too late, the consequences of cardiomyopathy can be very serious. If left untreated, cardiomyopathy can weaken the heart, leading to complications and more serious conditions. Currently, there is no known cure, but early diagnosis can better help patients live with this disease.
Think Cardiomyopathy
Led by GHH’s Cardiomyopathy Patient Council which has 24 patient organization affiliates across 15 countries, this year’s campaign focuses on patient and advocate stories on the impact of cardiomyopathy and the importance of recognizing symptoms and knowing your family history.
“Cardiomyopathy is too often under-diagnosed, 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 recognize 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 disease. 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/
About GHH’s Cardiomyopathy Patient Council
The Cardiomyopathy Patient Council was formed in November 2021 and brings together 24 patient organizations across 15 countries to increase awareness and understanding of cardiomyopathy. The Patient Council advocates for improved diagnosis of the condition, access to appropriate testing, counseling and treatments. In addition, the Council aims to raise awareness and improve understanding of the disease, to enable people to live well with the condition.
The Patient Council’s mission is to identify and bring together cardiomyopathy-focused and patient-led organizations 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.
About GCAC
The Genetic Cardiomyopathy Awareness Consortium (GCAC) was launched in the U.S. in early 2023 by eight U.S.-based cardiomyopathy patient groups to raise awareness about the need for genetic testing for cardiomyopathy patients and family members. The purpose of this consortium is to raise awareness and to get more cardiomyopathy patients and family members genetically tested, which will help save lives and advance genetic research and therapies.
Gregory Ruf
DCM Foundation
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1 http://globalhearthub.org/think-cardiomyopathy/
2 http://globalhearthub.org
3 http://geneticcardiomyopathy.org
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