Aicarm joins Global Heart Hub, a worldwide alliance between patient associations
di Annalisa and Matteo Pinciroli
Global Heart Hub and Aicarm: the birth of a collaboration that makes AICARM part of an international network of associations which aims to create a unique and global voice for all patients suffering from heart disease. Global Heart Hub (www.globalhearthub.org, headquartered in Ireland) is the first non-profit organization globally, which aims to create an alliance between the different patient organizations born in the world to support people with a heart condition. It is a platform that allows patients to share their knowledge, their point of view, to learn from each other from the best experiences in different countries. The ultimate goal is to raise awareness of different pathologies in order to improve the quality and duration of life of people living with a heart condition.
Why did AICARM decide to join Global Heart Hub?
Within the Global Heart Hub, a specific table was created in November 2021 (called "Cardiomyopathy Patient Council", https://globalhearthub.org/patient-councils/cardiomyopathy/) which specifically brings together organizations of patients with cardiomyopathies from United States, Australia, Holland, Spain, United Kingdom, Germany and Italy (thanks to the presence of AICARM). The "Cardiomyopathy Patient Council" supports a better diagnosis of cardiomyopathies and intends to facilitate the pathways for appropriate diagnosis and treatment. The objectives of the "Cardiomyopathy Patient Council" are specifically:
• Identify and bring together cardiomyopathy-focused and patient-led organizations around the world to create a global alliance and common voice of the patient;
• Share ideas, best practices, patient experiences and resources within the network;
• Increase awareness and understanding of cardiomyopathy by communicating up-to-date information about the condition, treatment guidelines, patient experiences and research;
• To train, promote and support international research.
AICARM has evaluated the mission of Global Heart Hub perfectly in accordance with its own vocation and has considered that this international activity can offer the opportunity to benefit from the experience of other patient associations abroad and at the same time to offer its own contribution.
How does the collaboration take place?
The affiliation, completely free for AICARM, allows you to be included in the global network of Global Heart Hub and to benefit from activities (mainly communication campaigns) financed and led by Global Heart Hub, which AICARM will have to implement at an Italian level. Thanks to the patronage of the "Cardiomyopathy Patient Council" we will try to address the needs of people suffering from cardiomyopathy, through the following directives:
• Highlight the signs and symptoms of cardiomyopathy and the importance of family history of heart disease in any clinical consultation;
• Ensure greater use of diagnostic tests and faster access to specialist care;
• Improve access to appropriate genetic screening and testing, as well as genetic counseling for patients and their families;
• Provide appropriate educational material to enable individuals to independently monitor vital signs and symptoms;
• Helping people with cardiomyopathy adapt their lifestyles and live well.
What are the benefits of joining Global Heart Hub and what are the next steps?
As an affiliated association, AICARM is updated on events and campaigns and participates in periodic alignment meetings (one per quarter) with the various affiliated patient associations from around the world. AICARM references have been added to the Global Heart Hub website and vice versa. In particular - as a short next step - Global Heart Hub is planning an international communication campaign aimed at raising awareness on cardiomyopathies, and AICARM will be part of it. Stay tuned for more updates!