I am Simone De Vergori and I am responsible for connecting the association ACMRC ONLUS with the rest of the world. Associazione Cardiomiopatie e Malattie Rare Connesse ONLUS in English “cardiomyopathy and related rare disease association”
This association was established in the 2010 by patients and patients’ parents affected by with Cardiomiopathies, together with a Scientific Committee made up by Cardiologists working at the Monaldi Hospital, in Napoli, Italy.
- Raise the patients’ quality of life by providing them and their families with psychological support as well as physical help
- Promote any type of events to inform people about symptoms and medical treatments of cardiomyopathies and its rare cardiovascular related diseases RCD).
- Spread an awareness within the Italian territory of these diseases in order to attempt to reduce sudden death (SD). SD is killing many (apparently healthy) young people during sports activities.
- Create a new platform where private citizens, institutions, public and private hospitals can find useful information relating to the many issues faced every day by those who need medical help.
- Encourage knowledge sharing about the evolution of therapy and new discoveries, within the National and International Territories.
- Providing scholarships to doctors and paramedics involved in CMP and RCD.
- Establish links and cooperate with other associations or any organizations having the same purpose
- Provide economic and practical help to all the activities of social and health care.
- Encourage fundraising activities to ensure a regular source of income through donations and private contributions in order to achieve the association’s aims.