Full Partners

Country Center City Representative
Belgium Antwerp University Hospital Antwerp Geert Mortier 
Belgium University Hospital Ghent Ghent Hans-Georg Zmierczak 
Czech Republic University Hospital Motol Prague Ondrej Soucek 
Estonia Tartu University Hospital Tartu Katre Maasalu
France Assistance Publique- Hôpitaux de Paris, Hôpital Necker-Enfants Malades Paris Valerie Cormier-Daire
France Hospices Civils de Lyon Lyon Roland Chapurlat
France Assistance Publique- Hôpitaux de Paris, Hôpital Cochin Paris Christian Roux
France CHU de Toulouse Toulouse Jean-Pierre Salles
France Assistance Publique- Hôpitaux de Paris, Hôpital Bicêtre Paris Agnès Linglart
Germany Universitätsklinikum Freiburg Freiburg Ekkehart Lausch
Germany Universitätsklinikum Köln Köln Joerg Oliver Semler
Germany Universitätsklinikum Magdeburg Magdeburg Klaus Mohnike
Germany Klinikum der Universität München Munich  Susanne Bechtold
Germany Universitätsklinikum Essen Essen Frank Kaiser
Italy Foundation IRCCS CA’Granda Ospedale Maggiore polyclinic Milan Giovanna Mantovani
Italy AOU Careggi, Florence Florence Maria Luisa Brandi
Italy AOUI Verona Verona Davide Gatti
Italy IRCCS Istituto Giannina Gaslini Genoa Maria Beatrice Michelis
Italy AO Padua Padua Sandro Giannini
Italy IRCCS Burlo Garofolo Trieste Marco Carbone
Italy Rizzoli Orthopaedic Institute of Bologna Bologna Luca Sangiorgi
Netherlands Leiden University Medical Center Leiden Neveen Hamdy
Netherlands Erasmus MC: University Medical Center Rotterdam Rotterdam Carola Zillikens
Portugal Centro Hospitalar e Universitário de Coimbra, EPE Coimbra Sergio Bernardo De Sousa
Sweden Karolinska University Hospital Stockholm Lars Sävendahl
United Kingdom The Newcastle upon Tyne Hospitals NHS Foundation Trust Newcastle Michael Wright
United Kingdom Birmingham Children’s Hospital NHS Foundation Trust Birmingham Vrinda Saraff
United Kingdom University Hospitals Bristol NHS Foundation Trust Bristol Christine Burren
United Kingdom Sheffield Children’s NHS Foundation Trust Sheffield Nick Bishop
United Kingdom NHS Greater Glasgow and Clyde Board Glasgow Faisal Ahmed
United Kingdom Oxford University Hospitals NHS Foundation Trust Oxford Kassim Javaid
United Kingdom Central Manchester University Hospitals NHS Foundation Trust Manchester Raja Padidela
United Kingdom Guy’s and St Thomas’ NHS Foundation Trust London Moira Cheung
United Kingdom Great Ormond Street Hospital for Children NHS Foundation Trust London Jeremy Allgrove
United Kingdom University Hospital Southampton NHS Foundation Trust Southampton Justin Davies
United Kingdom Sheffield Children’s NHS Foundation Trust Stanmore Richard Keen
United Kingdom Sheffield Teaching Hospitals NHS Foundation Trust Sheffield Jennifer Walsh
United Kingdom Alder Hey Children’s NHS Foundation Trust Liverpool Renuka Ramakrishnan

Affiliated Partners 

Country Center City   Representative
Austria

Vienna Bone and Growth Center

Vienna Gabriele Haeusler
Croatia University Hospital Centre Zagreb Zagreb Domagoj Delimar
Denmark Odense Universitetshospital Odense Anders J. Schou
Denmark Aarhus Universitetshospital Aarhus Pernille A. Gregersen
Denmark Copenhagen University Hospital Rigshospitalet Copenhagen Thomas Borbjerg Andersen
Finland Turku University Hospital Turku Ville Aarimaa
Latvia Hospital of Traumatology and Orthopaedics, Riga Latvia Riga Lauris Repsa
Lithuania Vilnius University Hospital Santaros Klinikos Vilnius Sarunas Bernotas
Lithuania Hospital of Lithuanian University of Health Sciences Kauno Klinikos Kaunas Emilis Čekanauskas
Spain Hospital Universitario la Paz Madrid Fernando Carceller Benito
Spain Hospital Infantil Universitario Nino Jesus Madrid Juan Carlos Abril Martin
Spain Complejo Hospitalario Regional Virgen del Rocio Sevilla Pedro Cano Luis
Spain Hospital San Juan de Déu, Esplugues de Llobregat Barcelona César Galo Garcia Fontecha
Spain Hospital Universitari Vall D’Hebron Barcelona Daniel Pacha Vicente
Malta Mater Dei Hospital Malta James Clark
Luxembourg Centre Hospitalier du Luxembourg Luxembourg Martine Goergen
Slovenia University Medical Center Ljubljana Luca Lovrečić
Hungary Semmelwies University Budapest Maria Judit Molnar

New ERN member application call

The European Commission launched the “2019 call for membership to the existing European Reference Networks (ERNs)” (https://ec.europa.eu/health/ern/consultations/2019_call_membership_en) with the aim to allow Healthcare Providers (HCPs) to join the already existing 24 ERNs, following the adoption of the Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Decision 2014/287/EU.

The application process consisted in the application and the self-assessment forms and included the following documents to be uploaded by the applicant HCP:

  • Letter of endorsement from its National Authority;
  • Declaration form signed by the CEO or Director of the Healthcare provider;
  • Declaration form signed by the Representative of the Healthcare provider.

After the call ended, the evaluation process started and it consists in the following steps:
1. Eligibility check by the European Commission (up to 45 days)
2a. Assessment by the ERN Board of the Network to deliver an opinion (up to 90 days)
2b. In case of unfavourable opinion, the applicant will be allowed to reply and provide additional information (up to 30 days) and then the ERN Board of the Network will formulate the final opinion (up to 30 days)
3. Assessment by the Independent Assessment Body (nominated by EC) to deliver an assessment report (up to 180 days)
4. Final approval by the Board of the Member States (up to 60 days)

After the eligibility check by the European Commission, ERN BOND received a total of 28 application to be evaluated.
The ERN BOND Management Committee during the network midterm face-to-face meeting held in November 2019, elected the ERN BOND Steering Committee, plus 2 BOND ePAGs non-member of the committee as the Evaluation Board for the application assessment. Therefore, in the evaluation process will be applied all the governing rules of the Steering Committee already in place, including for instance the voting procedure in case of disagreement. In particular, a two-thirds majority of the Evaluation Board members is required for the opinion. Each board member counts for one vote.

The Evaluation Board will compile the form provided by the European Commission and express the favourable / unfavourable opinion to be uploaded within 90 days into the EC devoted platform. The applicant will be automatically notified through the EC platform.
HCPs applying for full membership are expected to actively contribute to the mission of ERN BOND, including availability of their medical staff to provide expertise to the CPMS panels and active participation into network activities.

The following criteria of the self-assessment form will be evaluated by the Evaluation Board, the same applied for current full membership:
• detailed self-assessment, with comments in all items;
• presence of supporting documentation (if applicable);
• caseload volume (paediatrics plus adults pts) above n. 150 patients/year, according to the EC scope, criteria and thresholds of the diseases https://ec.europa.eu/health/sites/health/files/ern/docs/specificcriteria_en.xlsx
• number of specialised rare disease groups and sub-groups
• number of diverse types of services covered