Redes europeias de referência
As redes europeias de referência ajudam os profissionais e os centros de competência existentes nos vários países a partilharem o conhecimento.
As redes europeias de referência devem:
- aplicar os critérios da UE às doenças raras que exigem cuidados especiais
- funcionar como centros de investigação e conhecimento, tratando doentes de outros países da UE
- garantir a disponibilidade de instalações e equipamento para tratamento quando necessário
Informação adicional:
- Sítio da Comissão Europeia: https://ec.europa.eu/health/ern_pt
- Sítio da RD-ACTION: http://www.rd-action.eu/european-reference-networks-erns/
Lista da RRE
- 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