Coordination of European Reference Networks

Ternhis 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
BOND Rare Bone Disorders Istituto Ortopedico Rizzoli, ITALY Luca Sangiorgi
 

CRANIO

 

Rare Craniofacial anomalies and ENT disorder Erasmus Medical Centre, Rotterdam – THE NETHERLANDS Irene Mathijssen
 

ENDO-ERN

 

Rare Endocrine Diseases Leiden University Medical Centre – THE NETHERLANDS Alberto Pereira
EpiCARE  Rare and Complex Epilepsies UCL Institute of Child Health – UNITED KINGDOM Helen Cross
ERKNET  European Rare Kidney Diseases Reference Network Heidelberg University Hospital – GERMANY Franz Schaefer
ERN-RND Rare Neurological Diseases University Hospital Tübingen – GERMANY Holm Graessner
ERNICA Rare Gastrointestinal Diseases (Rare Inherited & Congenital Anomalies) Erasmus Medical Centre, Rotterdam – THE NETHERLANDS Rene Wijnen
ERN LUNG Rare Pulmonary Diseases Klinikum Goethe University Frankfurt – GERMANY Thomas Wagner
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
EURACAN Rare Adult Cancers (Solid Tumours) General Cancer Centre Léon Bérard – FRANCE Jean-Yves Blay
EuroBloodNet   Rare Haematological Diseases Service d’hématologie séniors, Hôpital St Louis FRANCE Pierre Fenaux
EURO-NMD Rare Neuromuscular Diseases Newcastle Upon Tyne Hospitals (John Walton Muscular Dystrophy Research Centre) UNITED KINGDOM Kate Bushby
ERN-EYE Rare Eye Diseases Hôpitaux Universitaires de Strasbourg – FRANCE Hélène Dollfus
ERN GENTURIS European Reference Network on GENetic TUmour RIsk Syndromes University Medical Center St Radboud Nicoline Hoogerbrugge
EUROGEN  Rare Urogenital Diseases Sheffield Teaching Hospitals NHS Foundation Trust – UNITED KINGDOM Chris Chapple
GUARD-HEART Gateway to Uncommon And Rare Diseases of the HEART Academic Medical Centre, Amsterdam- THE NETHERLANDS Arthur Wilde
ITHACA  Congenital Malformations and Rare Intellectual Disability Central Manchester University Hospitals, UNITED KINGDOM Jill Clayton-Smith
MetabERN Rare Hereditary Metabolic Disorders  Centre for Rare Diseases (ZSE) Helios Dr. Schmidt Kliniken Wiesbaden – GERMANY Maurizio Scarpa
PaedCan-ERN Paediatric Cancer ERN (haemato-oncology) St. Anna Kinderkrebsforschung e.V.– AUSTRIA Ruth Ladenstein
RARE-LIVER Rare Hepatological Diseases Newcastle Upon Tyne Hospitals – UNITED KINGDOM David Jones
ReCONNET Rare Connective Tissue and Musculoskeletal Diseases  Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana- ITALY Marta Mosca
RITA  Rare Immunodeficiency, Autoinflammatory and Autoimmune Disease Network  Newcastle upon Tyne Hospitals Foundation Trust, UNITED KINGDOM Andrew Cant
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
VASCern   Rare Multi-systemic Vascular Diseases CHU Paris Nord-Val de Seine – Hôpital Bichat-Claude Bernard, AP-HP, FRANCE  Guillaume Jondeau