AICARM joins ERN GUARD-Heart, a European virtual network to facilitate access to the diagnosis and treatment of rare and complex heart diseases

European Reference Networks (ERNs) - European reference networks

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. No single country has the knowledge and skills to cure all rare and complex diseases.
ERNs offer the potential to offer patients and doctors across Europe access to the best skills and timely exchange of life-saving knowledge, without having to travel to another country.

The mission of ERN GUARD-Heart (https://guardheart.ern-net.eu/) is to facilitate access to the diagnosis and treatment of rare and complex heart diseases in adult and pediatric patients across the European Union. ERN GUARD-Heart brings together 44 expert healthcare institutions from 16 different Member States committed to patient-centered care and efficient practice based on evidence, knowledge, education and translational research.
The focus is on genetically transmitted heart disease and several specific procedures in pediatric patients. AICARM officially joined ERN GUARD-Heart starting from 25 September 2022 as EPAG (European Patient Advocacy Group) for Italy, as you can read in the ERN GUARD-Heart newsletter (October 2022 Newsletter ).

ERN Guard Heart Newsletter Extract

Welcome to the new ePAGs from Italy

 

Amsterdam, September 28, 2022

The list of European Patient Advocacy Groups (ePAGs) in ERN GUARD-Heart increases. The candidacies of two Italian associated partners have recently been approved: the Italian Association of Congenital Heart Disease Children and Adults (AICCA Onlus), represented by Giovanna Campioni and AICARM ONLUS, represented by Matteo Pinciroli. There are now 14 associate ePAG members and 5 support partners included in ERN GUARD-Heart. New patient organizations, especially from EU Member States that are not yet represented with a patient organization in the ERN (i.e. Belgium, Czech Republic, Hungary, Croatia, Ireland, Poland and Portugal), are very welcome. Patient organizations from Member States with an affiliated partner may also present patient representatives. For more information, contact the project management team (n.hofman@amsterdamumc.nl) or Ruth Biller (familie.biller@gmx.de) president of ERN GUARD Heart ePAGs.