6 Unidades y 4 Grupos Cl\u00ednicos Vinculados (GCV) al CIBERER se han incorporado a 5 de las 23 Redes Europeas de Referencia recientemente aprobadas, en concreto a las de enfermedades neuromusculares, metab\u00f3licas hereditarias, hematol\u00f3gicas y neurol\u00f3gicas raras.<\/p>\n
<\/p>\n
Las Redes Europeas de Referencia (ERN en sus siglas en ingl\u00e9s) son una iniciativa de la Comisi\u00f3n Europea que tiene como objetivo agrupar a centros y unidades especializados en diversos grupos de enfermedades complejas o raras con el objetivo de mejorar la eficacia y la coordinaci\u00f3n en la atenci\u00f3n sanitaria.<\/p>\n
<\/p>\n
La ERN en las que est\u00e1n involucrados los investigadores del CIBERER y los grupos participantes son los siguientes:<\/p>\n
<\/p>\n
1) European Reference Network for Rare Neuromuscular Diseases (EURO-NMD):
Isabel Illa. Hospital Sant Pau-U762.
Juan J. V\u00edlchez. Hospital La Fe-U763.
Francesc Palau. Hospital San Joan de D\u00e9u-U732.
Rafael Artuch. Hospital San Joan de D\u00e9u-U703.
Mireia del Toro. Hospital Vall d\u00b4Hebron-GCV 9.<\/p>\n
<\/p>\n
2) European Reference Network for Rare Hereditary Metabolic Disorders (METAB-ERN):
Miguel \u00c1ngel Mart\u00edn Casanueva. Hospital 12 de Octubre-U723.
M\u00aa Luz Couce. Hospital de Santiago de Compostela-GCV 5.
Luis Ald\u00e1miz Echevarr\u00eda. Hospital de Cruces-GCV 10.
Mireia del Toro. Hospital Vall d\u00b4Hebron-GCV 9.
Rafael Artuch. Hospital San Joan de D\u00e9u-U703.<\/p>\n
<\/p>\n
3) European Reference Network on Rare Neurological Diseases (ERN-RND):
Rafael Artuch. Hospital San Joan de Deu-U703.
Mireia del Toro. Hospital Vall d\u00b4Hebron-GCV 9.<\/p>\n
<\/p>\n
4) European Reference Network on Rare Hematological Diseases (EuroBloodNet):
Joan Llu\u00eds Vives Corrons. Hospital Cl\u00ednic-GCV 20.<\/p>\n
<\/p>\n
5) European Reference Network on Rare Endocrine Conditions (Endo-ERN):
Antonio Carrascosa. Vall d’Hebron Institut de Recerca-U712.<\/p>\n
<\/p>\n
En esta convocatoria de ERN de 2016, se recibieron 24 solicitudes que involucraban 26 estados miembros, 370 hospitales y casi 1.000 unidades de alta especializaci\u00f3n.<\/p>\n
<\/p>\n
Las 23 redes aprobadas son las siguientes:
1. BOND – European Reference Network on Rare Bone Disorders
2. CRANIO – European Reference Network on Rare craniofacial anomalies and ENT disorders
3. Endo-ERN – European Reference Network on Rare Endocrine Conditions
4. EpiCARE – European Reference Network on Rare and Complex Epilepsies
5. ERKNet – European Rare Kidney Diseases Reference Network
6. ERN-RND – European Reference Network on Rare Neurological Diseases
7. ERNICA – European Reference Network on Rare inherited and congenital anomalies
8. ERN-LUNG – European Reference Network on Rare Respiratory Diseases
9. ERN-Skin – European Reference Network on Rare and Undiagnosed Skin Disorders
10. EURACAN – European Reference Network on Rare Adult Cancers (solid tumors)
11. EuroBloodNet – European Reference Network on Rare Hematological Diseases
12. EURO-NMD – European Reference Network for Rare Neuromuscular Diseases
13. ERN-EYE – European Reference Network on Rare Eye Diseases
14. ERN GENTURIS
European Reference Network on GENetic TUmour RIsk Syndromes
15. GUARD-HEART – Gateway to Uncommon And Rare Diseases of the HEART
16. ITHACA – European Reference Network on Rare Congenital Malformations and Rare Intellectual Disability
17. MetabERN – European Reference Network for Rare Hereditary Metabolic Disorders
18. PaedCan-ERN – European Reference Network for Paediatric Cancer (haemato-oncology)
19. RARE-LIVER – European Reference Network on Rare Hepatological Diseases
20. ReCONNET – Rare Connective Tissue and Musculoskeletal Diseases Network
21. RITA – Rare Immunodeficiency, Autoinflammatory and Autoimmune Diseases Network
22. TRANSCHILD – European Reference Network on Transplantation in Children (incl. HSCT, heart, kidney, liver, intestinal, lung andmultiorgan)
23. VASCern – European Reference Network on Rare Multisystemic Vascular Diseases<\/p>\n
\nSource: FEDER<\/p>\n","protected":false},"excerpt":{"rendered":"
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