Europese referentienetwerken
Europese referentienetwerken (ERN's) helpen professionals en expertisecentra uit verschillende landen kennis te delen.
ERN's moeten:
- EU-criteria toepassen op zeldzame ziekten die gespecialiseerde zorg vergen
- fungeren als onderzoeks- en kenniscentra die patiënten uit andere EU-landen behandelen
- ervoor zorgen dat de nodige behandelingsfacliteiten voorhanden zijn
Aanvullende informatie:
- Website van de Europese Commissie: https://ec.europa.eu/health/ern_nl
- Website RD-ACTION: http://www.rd-action.eu/european-reference-networks-erns/
Lijst van ERN's
- European Reference Network on Rare Bone Disorders - ERN BOND
- European Reference Network on Rare craniofacial anomalies and ENT disorders - ERN CRANIO
- European Reference Network on Rare Endocrine Conditions - Endo-ERN
- European Reference Network on Rare and Complex Epilepsies - EpiCARE
- European Rare Kidney Diseases Reference Network - ERKNet
- European Reference Network on Rare Neurological Diseases - ERN-RND
- European Reference Network on Rare inherited and congenital anomalies - ERNICA
- European Reference Network on Respiratory Diseases - ERN-LUNG
- European Reference Network on Rare and Undiagnosed Skin Disorders - ERN-Skin
- European Reference Network on Rare Adult Cancers (solid tumors) - EURACAN
- European Reference Network on Rare Hematological Diseases - EuroBloodNet
- European Reference Network for Rare Neuromuscular Diseases - EURO-NMD
- European Reference Network on Rare Eye Diseases - ERN-EYE
- European Reference Network on GENetic TUmour RIsk Syndromes - ERN GENTURIS
- Rare Urogenital Diseases - EUROGEN
- Gateway to Uncommon And Rare Diseases of the HEART - GUARD-HEART
- European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability - ITHACA
- European Reference Network for Rare Hereditary Metabolic Disorders - MetabERN
- European Reference Network for Paediatric Cancer (haemato-oncology) - PaedCan-ERN
- European Reference Network on Rare Hepatological Diseases - RARE-LIVER
- Rare Connective Tissue and Musculoskeletal Diseases Network - ReCONNET
- Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases Network - RITA
- European Reference Network on Transplantation in Children (incl. HSCT, heart, kidney, liver, intestinal, lung andmultiorgan) - TransplantChild
- European Reference Network on Rare Multisystemic Vascular Diseases - VASCERN