This is a list of the approved Healthcare Providers (HCPs) coordinating the ERN in each Thematic Group: please see the official EC pages here.
UPDATE! To complement the official summaries provided by DG SANTE, you can read about the structure and goals of each ERN by clicking on NETWORK NAME, below
Network Name | Thematic Grouping | Coordinating HCP | Name of Coordinator | Website |
BOND | Rare Bone Disorders | Istituto Ortopedico Rizzoli, ITALY | Luca Sangiorgi | ERN-BOND |
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Rare Craniofacial anomalies and ENT disorder | Erasmus Medical Centre, Rotterdam – THE NETHERLANDS | Irene Mathijssen | ERN-CRANIO |
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Rare Endocrine Diseases | Leiden University Medical Centre – THE NETHERLANDS | Alberto Pereira | ENDO-ERN |
EpiCARE | Rare and Complex Epilepsies | UCL Institute of Child Health – UNITED KINGDOM | Helen Cross | EpiCARE |
ERKNET | European Rare Kidney Diseases Reference Network | Heidelberg University Hospital – GERMANY | Franz Schaefer | ERKnet |
ERN-RND | Rare Neurological Diseases | University Hospital Tübingen – GERMANY | Holm Graessner | ERN-RND |
ERNICA | Rare Gastrointestinal Diseases (Rare Inherited & Congenital Anomalies) | Erasmus Medical Centre, Rotterdam – THE NETHERLANDS | Rene Wijnen | ERNICA |
ERN LUNG | Rare Pulmonary Diseases | Klinikum Goethe University Frankfurt – GERMANY | Thomas Wagner | ERN-LUNG |
ERN-Skin | Rare and Undiagnosed Skin Disorders | MAGEC (Centre de Référence des Maladies Rares et Génétiques à Expression Cutanée), Service de Dermatologie, Hôpital Necker Enfants Malades – FRANCE | Christine Bodemer | ERN-Skin |
EURACAN | Rare Adult Cancers (Solid Tumours) | General Cancer Centre Léon Bérard – FRANCE | Jean-Yves Blay | EURACAN |
EuroBloodNet | Rare Haematological Diseases | Service d’hématologie séniors, Hôpital St Louis FRANCE | Pierre Fenaux | EuroBloodNet |
EURO-NMD | Rare Neuromuscular Diseases | Newcastle Upon Tyne Hospitals (John Walton Muscular Dystrophy Research Centre) UNITED KINGDOM | Kate Bushby | EURO-NMD |
ERN-EYE | Rare Eye Diseases | Hôpitaux Universitaires de Strasbourg – FRANCE | Hélène Dollfus | ERN-EYE |
ERN GENTURIS | European Reference Network on GENetic TUmour RIsk Syndromes | University Medical Center St Radboud | Nicoline Hoogerbrugge | GENTURIS |
EUROGEN | Rare Urogenital Diseases | Sheffield Teaching Hospitals NHS Foundation Trust – UNITED KINGDOM | Chris Chapple | eUROGEN |
GUARD-HEART | Gateway to Uncommon And Rare Diseases of the HEART | Academic Medical Centre, Amsterdam- THE NETHERLANDS | Arthur Wilde | ERN GUARD-HEART |
ITHACA | Congenital Malformations and Rare Intellectual Disability | Central Manchester University Hospitals, UNITED KINGDOM | Jill Clayton-Smith | ERN ITHACA |
MetabERN | Rare Hereditary Metabolic Disorders | Centre for Rare Diseases (ZSE) Helios Dr. Schmidt Kliniken Wiesbaden – GERMANY | Maurizio Scarpa | MetabERN |
PaedCan-ERN | Paediatric Cancer ERN (haemato-oncology) | St. Anna Kinderkrebsforschung e.V.– AUSTRIA | Ruth Ladenstein | ERN PaedCan |
RARE-LIVER | Rare Hepatological Diseases | Newcastle Upon Tyne Hospitals – UNITED KINGDOM | David Jones | ERN RARE-LIVER |
ReCONNET | Rare Connective Tissue and Musculoskeletal Diseases | Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana- ITALY | Marta Mosca | ERN ReCONNET |
RITA | Rare Immunodeficiency, Autoinflammatory and Autoimmune Disease Network | Newcastle upon Tyne Hospitals Foundation Trust, UNITED KINGDOM | Andrew Cant | ERN RITA |
TRANSCHILD | TRANSPLANTATION IN CHILDREN – (incl. HSCT, heart, kidney, liver, intestinal, lung and multiorgan) | Instituto de Investigación Sanitaria del Hospital La Paz-IdiPAZ (SPAIN) | Manolo López Santamaría | ERN TRANSPLANT-CHILD |
VASCern | Rare Multi-systemic Vascular Diseases | CHU Paris Nord-Val de Seine – Hôpital Bichat-Claude Bernard, AP-HP, FRANCE | Guillaume Jondeau | VASCERN |