Innovation and Networks Executive Agency

2018-EU-IA-0173

ERN MetabERN - European Reference Network European Reference Network for Rare Hereditary Diseases
Programme: 
CEF Telecom
Call year:
Location of the Action:
Implementation schedule: 
June 2019 to October 2020
Maximum EU contribution: 
€210,001
Total eligible costs: 
€280,001
Percentage of EU support: 
75%
Coordinator: 

Azienda Sanitaria Universitaria Integrata di Udine (Italy)
https://asuiud.sanita.fvg.it/

Status:
DSI:
Additional information: 

Digital Single Market (DSM) strategy
http://ec.europa.eu/priorities/digital-single-market

DSM - Connecting Europe Facility
http://ec.europa.eu/digital-single-market/connecting-europe-facility

CEF Digital portal
https://ec.europa.eu/cefdigital

Innovation and Networks Executive Agency (INEA)
http://inea.ec.europa.eu

Cross-border Healthcare Directive
http://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:32011L0024&...

Last modified: 
November 2020

2018-EU-IA-0173

The European Reference Network European Reference Network (ERN) for Rare Hereditary Diseases (MetabERN) was officially set up in 2017 in accordance with Directive 2011/24/EU. The overall goal of MetabERN is to develop innovative care models and improve cross border care for patients suffering from rare and/or complex diseases and conditions in hereditary metabolic diseases.

The main objective of this Action is to continue developing and implementing IT applications, as well as supporting their use by the MetabERN health care providers, to ensure the increased use of the core service platforms, the ERN Collaborative Platform (ECP) and the Clinical Patient Management System (CPMS).

This Action builds upon the CEF-funded Action 2017-DE-IA-0109, which aimed to set up the MetabERN Operational Helpdesk.

The Action will facilitate access to highly specialised knowledge and care for patients suffering from rare and severe diseases.

Case-oriented e-learning/e-training within MetabERN will be carried out to train and educate new generations of physicians, and interconnectivity will be ensured in the entire care chain between IEM-patients, primary care physicians, local hospitals and the centres of expertise to prevent metabolic emergencies in patients.