Articles and news on the international activities of AICARM Onlus
The Cardiomyopathy Patient Council Meeting & Industry Round Table Meeting will take place in Florence on Saturday 30 September, Sunday 1 and Monday 2 October. AICARM welcomes all participants in this important meeting organized by GGH.
Also this year, AICARM Onlus took part in the CardioMYopathy Awareness Week, an important global initiative dedicated to raising public awareness of cardiomyopathies and the genetic analysis useful for identifying the gene or genes responsible for the development of cardiomyopathy.
AICARM protagonist of the initiative of the European Parliament which on 15 November placed cardiomyopathies at the center of attention in a conference entitled: “Cardiomyopathies issue: cardiovascular diseases underestimated in Europe”.
AICARM joins ERN GUARD-Heart, a European virtual network to facilitate access to the diagnosis and treatment of rare and complex heart diseases. ERNs, the result of a European Commission project, are virtual networks involving healthcare institutions across Europe. They aim to address complex or rare diseases and conditions that require highly specialized care and concentration of knowledge and resources.
AICARM fully supports the Global Heart Hub Guiding Principles for Patient Involvement and Engagement in Cardiomyopathy Research. Global Heart Hub (GHH) supports the principle of patient involvement and engagement in Cardiomyopathy Research. The GHH Cardiomyopathy Patient Council believes that the perspective of people with personal experience of Cardiomyopathy, and the impact it can have, should inform all stages of the research process to lead to better outcomes for people with the condition.
Cardiomyopathy is a family of diseases that affect the heart muscle: "cardio" means heart, "mine" means muscle and "patia" means disease. It is not a specific disease, but a group of diseases that affect the structure of the heart and reduce its ability to pump blood throughout the body.
The international social communication campaign aimed at raising awareness of cardiomyopathies in the population has ended, with the aim of creating a single and global voice for all affected patients. It was the first joint action carried out by Aicarm after its entry into Global Heart Hub, a worldwide alliance between patient associations.
Aicarm enters the Global Heart Hub, a global alliance between the patient associations of Annalisa and Matteo Pinciroli Global Heart Hub and Aicarm: the birth of a collaboration that makes AICARM part of an international network of associations whose aim is to create a unique voice and global for all heart disease patients. Global Heart Hub (www.globalhearthub.org, based in [...]
