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Coordination of Rare Disease ERNs: the View from the ‘Matchmaker’

This is a provisional list of the Healthcare Providers (HCPs) understood by the RD-ACTION team to be planning to coordinate the ERN in each Thematic Group.

Several important clarifications and caveats are necessary:

  • The purpose of this table is to facilitate transparency, cooperation and cross-talk between stakeholders planning to coordinate or join ERNs
  • Please note that this list is in no way connected to the formal European Commission application/evaluation/approval process for ERNs (official pages may be found here); rather, it represents the status quo regarding ERN proposals, based upon the RD-ACTION ERN ‘Matchmaker’.
  • The table does not claim to be exhaustive, or to constitute a definitive record of all ERN proposals in development. The list has been compiled based upon the information received through the RD-ACTION ‘Matchmaking’ resource; therefore, only HCPs which have utilised this resource and shared -and negotiated- their respective proposals via the communities of Matchmaker respondents appear below.
  • The Matchmaker Tool -and consequently the table-  is built around the model espoused in the 2015 Addendum to the EUCERD Recommendations on RD ERNs which was adopted by the Commission Expert Group on Rare Diseases. The Joint Action supports the strategic guidance issues by the Board of Member States, which supports the CEGRD model and emphasises “the importance of developing ONE application per thematic grouping and not having competing applications under one grouping”.
  • Many – if not all- ERNs will arrange themselves into sub-domains at a more clinically-operational level. These sub-domains and their leads do not appear here; however, as overviews of each ERN proposal are received, they will be made accessible via the table below
 Thematic Grouping Coordinating HCP  Name of Coordinator
Rare Bone Diseases (BOND) Istituto Ortopedico Rizzoli , ITALY Luca Sangiorgi
Paediatric Cancer ERN (PaedCan-ERN) St. Anna Kinderkrebsforschung e.V.– AUSTRIA Ruth Ladenstein
Rare Cancers and Tumours (Adult)** General Cancer Centre Léon Bérard – FRANCE Jean-Yves Blay
Rare Cardiac Diseases (GUARD-HEART) Academic Medical Centre, Amsterdam- THE NETHERLANDS Arthur Wilde
Rare Connective Tissue and Musculoskeletal Diseases (ReCONNET) Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana- ITALY Marta Mosca
Rare Craniofacial and ENT TBC
Rare Endocrine Diseases (ENDO-ERN) Leiden University Medical Centre – THE NETHERLANDS Alberto Pereira
Rare Eye Diseases
Hôpitaux Universitaires de Strasbourg – FRANCE  Hélène Dollfus
Rare Gastrointestinal Diseases (ERN-CAM) Erasmus Medical Centre, Rotterdam – THE NETHERLANDS  Rene Wijnen
Rare Gynaecological & Obstetric Diseases TBC
Rare Haematological Diseases (eurobloodnET) Hospital Clinic of Barcelona – SPAIN  Joan-Lluis Vives Corrons
Rare Hepatic Diseases (ERN-LIVER) Newcastle Upon Tyne Hospitals – UNITED KINGDOM David Jones
Rare Hereditary Metabolic Diseases
Centre for Rare Diseases (ZSE) Helios Dr. Schmidt Kliniken Wiesbaden – GERMANY Maurizio Scarpa
Rare Immunological and Auto Inflammatory Diseases
Rare Malformations and Developmental Anomalies and Rare Intellectual Disabilities (ITHACA) Central Manchester University Hospitals, UNITED KINGDOM Jill Clayton-Smith
Rare Multi-systemic Vascular Diseases CHU Paris Nord-Val de Seine – Hôpital Bichat-Claude Bernard, AP-HP, FRANCE  Guillaume Jondeau
Rare Neurological Diseases (ERN-RND) * University Hospital Tübingen – GERMANY Holm Graessner
Rare Neuromuscular Diseases
John Walton Muscular Dystrophy Research Centre, Newcastle Upon Tyne Hospitals UNITED KINGDOM Kate Bushby (Teresinha Evangelista)
Rare Pulmonary Diseases
Klinikum Goethe University Frankfurt – GERMANY Thomas Wagner
Rare Renal Diseases
Heidelberg University Hospital – GERMANY Franz Schaefer
Rare and Undiagnosed Skin Disorders (ERN-SKIN)   *** MAGEC (Centre de Référence des Maladies Rares et Génétiques à Expression Cutanée), Service de Dermatologie, Hôpital Necker Enfants Malades – FRANCE Christine Bodemer
Rare Urogenital Diseases Sheffield Teaching Hospitals NHS Foundation Trust – UNITED KINGDOM Chris Chapple (Michelle Battye)


*The RD-ACTION Matchmaker community under the Rare Neurological Diseases Grouping was informed that a proposal dedicated to Rare and Complex Epilepsies (EPI-CARE) is in development by HCP UCL Institute of Child Health: Helen Cross is coordinating this proposal

** The RD-ACTION Matchmaker community under the Rare Cancer Grouping was informed that a proposal dedicated to Genetic Tumour Risk Syndromes (GENTURIS) is in development by HCP University Medical Center St Radboud: Nicoline Hoogerbrugge is coordinating this proposal

***The RD-ACTION Matchmaker community under the Skin Diseases Grouping was informed that a proposal dedicated to Acquired immunoLogical Low prevalence and Complex Adult diseases of ThE skin (ALLOCATE) is in development by HCP Dessau Medical Centre, Germany: C.C. Zouboulis is coordinating this proposal


ERN ‘Matchmaker’ Resource

The ‘Matchmaker’ process is designed to be user-friendly and straightforward:

  1. Anyone interested in joining an RD ERN/establishing cross-talk with others in the same Thematic Grouping should click on the appropriate link below
  2. The user will be directed to a Form which requests several few core details
  3. Upon submission of this form, the data will be transmitted to the RD-Action team at Newcastle University, UK
  4. At intervals of approximately 3 weeks a spreadsheet of the responses received for each Thematic Grouping will be emailed to all those submitting their data under that same Thematic Grouping
  5. The onus is then on the specialists to use this information to make contact with one another, to continue to shape applications in each field, with the aim of encouraging collaboration and avoiding duplication

Please note that this process is informal and is entirely separate to the formal EC and MS activities around ERNs. Regrettably, RD-ACTION is not able to provide tailored support with ERN applications. Please also note that in each of these areas, coordinators have been established and proposals are quite advanced

! The Matchmaker will no longer accept new entries after 30th April; however, you will be able to find details of the Proposals here


European Reference Networks (ERNs)

The new Joint Action for Rare Diseases, RD-Action, continues the work of the previous Joint Action (EJA) to support the Rare Disease field in conceptualising, implementing, and evolving  European Reference Networks (ERNs).

Resources and FAQs on ERNs

The RD-Action Informal ERN ‘Matchmaker’

To facilitate discussions and collaboration between specialists, RD-Action’s Policy WP launched an informal Rare Disease ERN ‘matchmaking’ exercise. This approach is based upon the Rare Disease Groupings promoted by the Commission Expert Group on RD in its Addendum to the 2013 EUCERD Recommendations. More details are available here (Please note that this process was informal and entirely separate to the formal EC and MS activities around ERNs. Regrettably, RD-ACTION is not able to provide tailored support with ERN applications.)

Outputs of the Matchmaker resource

Meaningful Patient Involvement

As per the legal Acts and the Addendum to the Recommendations on RD ERNs, active patient involvement and patient-centeredness is essential in ERNs. EURORDIS has launched the EPAG (EURORDIS Patient Advisory Group) initiative to enable democratic patient representation – full details (and the names of appointed representatives) may be found here