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

    Commission Delegated Decision

     

    Please find here a presentation on ERNs

     

    Useful links 

    ERN Call ERN – HP-ERN-2016   and call document

     

    ERN Assessment Manual for Applicants: 

    Description and Procedure

    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

    RD Action Informal Q&A on ERNs

    EURORDIS Q&A on ERNs 

    European Commission Info Day on ERNs

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