Event Information:
-
ERN
The ERN Project
- at least 10 Healthcare Providers from 8 EU countries
- Create 21 ERNs on Rare Diseases (RD grouping list here- Expert Group on RD of the European Commission, June 2015), including "Rare Multisystemic Vascular Diseases"
- ERNs gathering the best EU experts on Rare Diseases to face the challenges of rarity, benefit from EU cooperation, represent a home for every Rare Diseases Patient in Europe
Aims
- Link and pool existing highly specialised healthcare providers across the EU
–Institutionalize EU experts cooperation
–concrete projects: communication, telemedicine, teaching, research, information dissemination and evaluation
–overcome the challenges of rarity
- Facilitate access to diagnosis and treatment in rare or low prevalence complex diseases or conditions
–centralising: knowledge, experience, medical research, training, resources
–Reduce inequalities of treatment within the EU
Legislative background
Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare
- ERN to pursue at least 3 of the following 8 objectives (Article 12)
(a) to help realise the potential of European cooperation regarding highly specialised healthcare for patients and for healthcare systems by exploiting innovations in medical science and health technologies;
(b) to contribute to the pooling of knowledge regarding sickness prevention;
(c) to facilitate improvements in diagnosis and the delivery of high-quality, accessible and cost effective healthcare for all patients with a medical condition requiring a particular concentration of expertise in medical domains where expertise is rare;
(d) to maximise the cost-effective use of resources by concentrating them where appropriate;
(e) to reinforce research, epidemiological surveillance like registries and provide training for health professionals;
(f) to facilitate mobility of expertise, virtually or physically, and to develop, share and spread information, knowledge and best practice and to foster developments of the diagnosis and treatment of rare diseases, within and outside the networks;
(g) to encourage the development of quality and safety benchmarks and to help develop and spread best practice within and outside the network;
(h) to help Member States with an insufficient number of patients with a particular medical condition or lacking technology or expertise to provide highly specialised services of high quality.
ERN Criteria are defined in the secondary legislation:
Commission Implementing Decision
More information and details on Criteria : presentation on ERNs
Useful links
ERN Call ERN – HP-ERN-2016 and call document
ERN Assessment Manual for Applicants:
Technical Toolbox for Applicant
Operational Criteria for the Assessment of Network
Operational Criteria for the Assessment of Healthcare Providers
Healthcare Providers (HCP) Membership Application:
HCPs Application Form & Self-Assessment
Sample Letter of National Endorsement for HCPs
More information
European Commission ERNs policy and info on calls
Board of Member States ERNs implementation strategy (January 2016)
European Commission FAQ on ERNs