Scientific and medical knowledge on rare diseases is sometimes scarce and inadequate. For a long time they have been ignored by doctors, researchers and institutions and scientific and political activities aimed at research in the field of rare diseases did not exist until a few years ago.
The 2nd Training Course for "Patients expert in myocardial diseases", organized by Aicarm Onlus and financed with the contribution of the Cassa di Risparmio di Firenze Foundation, has concluded in Florence.
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”.
The first "Training course for patients expert in hereditary myocardial diseases" aimed at patients from Northern Italy was held in Milan on 28 October 2022. The course, spread over the whole day, was held in the Aula Magna on the eighth floor of the Auxologico San Luca hospital. The course was provided free of charge.
AICARM joins ERN GUARD-Heart, a virtual European network to facilitate access to the diagnosis and treatment of rare and complex heart diseases European Reference Networks (ERN) - European reference networks The ERNs, the result of a project of the European Commission, they are virtual networks involving healthcare institutions across Europe. They aim to address complex or rare diseases and conditions that require treatment [...]
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, [...]
The definition of Patient, according to the FDA (USA) is: any person with, or at risk of a specific health condition, whether or not they receive therapy to prevent or treat that condition. The concept of "expert patient" was expressed in 1985 by Prof. David Tucket, of the University of Cambridge (GB), who stated that medical treatments would be more effective if doctors [...]
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.
Good News from Aicarm Onlus. Summer has arrived, donation of the freezer to the Cardiomyopathies Unit of the AOUC Careggi, let's talk about Hearts in Listening
Safety and efficacy of new generation anticoagulant drugs - Interview with Prof. Rossella Marcucci, director of Sod atherothrombotic diseases of the University Hospital of Careggi