{"id":2190,"date":"2017-04-03T07:54:57","date_gmt":"2017-04-03T05:54:57","guid":{"rendered":"https:\/\/aliber.org\/web\/2017\/04\/03\/conoce-la-participacion-de-espana-dentro-de-las-erns\/"},"modified":"2017-04-03T07:54:57","modified_gmt":"2017-04-03T05:54:57","slug":"conoce-la-participacion-de-espana-dentro-de-las-erns","status":"publish","type":"post","link":"https:\/\/aliber.org\/web\/2017\/04\/03\/conoce-la-participacion-de-espana-dentro-de-las-erns\/","title":{"rendered":"Conoce la participaci\u00f3n de Espa\u00f1a dentro de las ERNs"},"content":{"rendered":"

El Ministerio de Sanidad, Servicios Sociales e Igualdad ha publicado informaci\u00f3n actualizada sobre el estado de situaci\u00f3n de las Redes Europeas de Referencia (ERNs) y, tambi\u00e9n, de los centros espa\u00f1oles que participar\u00e1n de las mismas.\u00a0<\/span>A d\u00eda de hoy existen 24 redes y Espa\u00f1a participa en 17 de ellas, destacando Catalu\u00f1a como la Comunidad Aut\u00f3noma con m\u00e1s centros participantes.<\/span><\/p>\n

<\/p>\n

Las Redes Europeas de Referencia (ERN) tienen como objetivo principal proveer el marco de rutas sanitarias para pacientes de Enfermedades Raras a trav\u00e9s de un alto nivel de especializaci\u00f3n integrada. Consiste, en definitiva, en proveer a los profesionales sanitarios de las herramientas y las gu\u00edas adecuadas a trav\u00e9s de estas Redes, por lo que resulta esencial que los centros espa\u00f1oles (CSUR) participen de las mismas.<\/p>\n

<\/p>\n

M\u00e1s informaci\u00f3n en la p\u00e1gina del Ministerio de Sanidad, Servicios Sociales e Igualdad<\/a><\/span>.<\/p>\n

<\/p>\n

\n<\/p>\n\n\n\n\n\n\n<\/colgroup>\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n\n
<\/p>\n

Redes Europeas de Referencia<\/h3>\n

\n<\/td>\n

<\/p>\n

 <\/p>\n

Coordinador<\/h3>\n

\n<\/td>\n

<\/p>\n

 <\/p>\n

N\u00famero de centros participantes<\/h3>\n

\n<\/td>\n

<\/p>\n

 <\/p>\n

Centros espa\u00f1oles<\/h3>\n

\n<\/td>\n

<\/p>\n

 <\/p>\n

CCAA<\/h3>\n

\n<\/td>\n


\n<\/tr>\n

ERN de s\u00edndromes gen\u00e9ticos con riesgo tumoral (<\/span>ERN GENTURIS)<\/span><\/td>\n

<\/p>\n

Prof. Nicoline Hoogerbrugge Radboud University Medical Center Nijmegen<\/td>\n

<\/p>\n

23<\/td>\n

<\/p>\n

Hospital Universitari Germans Trias i Pujol y ICO Badalona<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital de Sant Joan de D\u00e9u<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

ERN de c\u00e1nceres raros en adultos <\/span>(EURACAN)<\/span><\/td>\n

<\/p>\n

Professor Jean-Yves Blay Centre L\u00e9on B\u00e9rard<\/td>\n

<\/p>\n

65<\/td>\n

<\/p>\n

Complejo Hospitalario Regional Virgen del Roc\u00edo<\/td>\n

<\/p>\n

Andaluc\u00eda<\/td>\n


\n<\/tr>\n

Hospital de la Santa Creu i Sant Pau<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

ICO L\u00b4Hospitalet y Hospital Universitari de Bellvitge<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

ERN de c\u00e1ncer pedi\u00e1trico<\/span> (hemato-oncol\u00f3gico) (PaedCan-ERN)<\/span><\/td>\n

<\/p>\n

Professor Ruth Ladenstein St. Anna Kinderspital & St. Anna Kinderkrebsforschung<\/td>\n

<\/p>\n

57<\/td>\n

<\/p>\n

Complejo Hospitalario Regional Virgen del Roc\u00edo<\/td>\n

<\/p>\n

Andaluc\u00eda<\/td>\n


\n<\/tr>\n

Hospital de Sant Joan de D\u00e9u<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitari Vall d’Hebron<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitario y Polit\u00e9cnico La Fe<\/td>\n

<\/p>\n

Comunidad Valenciana<\/td>\n


\n<\/tr>\n

ERN de enfermedades hematol\u00f3gicas<\/span> raras (EuroBloodNet)<\/span><\/td>\n

<\/p>\n

Professor Pierre Fenaux Assistance Publique-H\u00f4pitaux de Paris, H\u00f4pital Saint-Louis<\/td>\n

<\/p>\n

66<\/td>\n

<\/p>\n

Hospital Universitari Vall d’Hebron<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

ERN de inmunodeficiencias y enfermedades autoinflamatorias y autoinmunes<\/span> raras (RITA)<\/span><\/td>\n

<\/p>\n

Professor Andrew Cant The Newcastle upon Tyne Hospitals NHS Foundation Trust<\/td>\n

<\/p>\n

24<\/td>\n

<\/p>\n

Hospital Universitari Vall d’Hebron<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

ERN de enfermedades endocrinas<\/span> raras (Endo-ERN)<\/span><\/td>\n

<\/p>\n

Professor Alberto M. Pereira
Leiden University Medical Center<\/td>\n

<\/p>\n

69<\/td>\n

<\/p>\n

Hospital de Sant Joan de D\u00e9u\u00a0<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitari Vall d’Hebron\u00a0<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitario de Cruces<\/td>\n

<\/p>\n

Pa\u00eds Vasco<\/td>\n


\n<\/tr>\n

ERN de trastornos metab\u00f3licos<\/span> hereditarios raros (MetabERN)<\/span><\/td>\n

<\/p>\n

Professor Maurizio Scarpa Helios Dr. Horst Schmidt Kliniken<\/td>\n

<\/p>\n

68<\/td>\n

<\/p>\n

Complexo Hospitalario Universitario de Santiago<\/td>\n

<\/p>\n

Galicia<\/td>\n


\n<\/tr>\n

Hospital de Sant Joan de D\u00e9u<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitari Vall d’Hebron<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitario 12 de Octubre<\/td>\n

<\/p>\n

Madrid<\/td>\n


\n<\/tr>\n

Hospital Universitario de Cruces<\/td>\n

<\/p>\n

Pa\u00eds Vasco<\/td>\n


\n<\/tr>\n

ERN de epilepsias complejas y raras<\/span> (EpiCARE)<\/span><\/td>\n

<\/p>\n

Professor Helen Cross Great Ormond Street Hospital for Children NHS Foundation Trust<\/td>\n

<\/p>\n

28<\/td>\n

<\/p>\n

Hospital Cl\u00ednic i Provincial de Barcelona y Hospital de Sant Joan de D\u00e9u<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital del Mar<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitario y Polit\u00e9cnico La Fe<\/td>\n

<\/p>\n

Comunidad Valenciana<\/td>\n


\n<\/tr>\n

ERN de enfermedades neurol\u00f3gicas<\/span> raras (ERN-RND)<\/span><\/td>\n

<\/p>\n

Dr Holm Graessner Universit\u00e4tsklinikum T\u00fcbingen<\/td>\n

<\/p>\n

31<\/td>\n

<\/p>\n

Hospital Cl\u00ednic i Provincial de Barcelona y Hospital de Sant Joan de D\u00e9u<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitari Vall d’Hebron<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

ERN de enfermedades neuromusculares<\/span> raras (EURO-NMD)<\/span><\/td>\n

<\/p>\n

Professor Kate Bushby The Newcastle upon Tyne Hospitals NHS Foundation Trust<\/td>\n

<\/p>\n

60<\/td>\n

<\/p>\n

Complejo Hospitalario Regional Virgen del Roc\u00edo<\/td>\n

<\/p>\n

Andaluc\u00eda<\/td>\n


\n<\/tr>\n

Hospital de la Santa Creu i Sant Pau<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital de Sant Joan de D\u00e9u<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitari Vall d’Hebron<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitario y Polit\u00e9cnico La Fe<\/td>\n

<\/p>\n

Comunidad Valenciana<\/td>\n


\n<\/tr>\n

ERN de enfermedades oftalmol\u00f3gicas<\/span> raras (ERN-EYE)<\/span><\/td>\n

<\/p>\n

Professor H\u00e9l\u00e8ne Dollfus H\u00f4pitaux Universitaires de Strasbourg<\/td>\n

<\/p>\n

30<\/td>\n

<\/p>\n

\u00a0<\/td>\n

<\/p>\n

\u00a0<\/td>\n


\n<\/tr>\n

ERN de anomal\u00edas craneofaciales y enfermedades otorrinolaringol\u00f3gicas<\/span> raras (CRANIO)<\/span><\/td>\n

<\/p>\n

Professor Irene Mathijssen Erasmus MC: University Medical Center Rotterdam<\/td>\n

<\/p>\n

29<\/td>\n

<\/p>\n

Hospital Universitario 12 de Octubre<\/td>\n

<\/p>\n

Madrid<\/td>\n


\n<\/tr>\n

Hospital Universitari Vall d’Hebron<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

ERN de enfermedades dermatol\u00f3gicas<\/span> raras y no diagnosticadas (ERN-Skin)<\/span><\/td>\n

<\/p>\n

Professor Christine Bodemer Assistance Publique-H\u00f4pitaux de Paris, H\u00f4pital Necker-Enfants Malades<\/td>\n

<\/p>\n

53<\/td>\n

<\/p>\n

Hospital Cl\u00ednic i Provincial de Barcelona y Hospital de Sant Joan de D\u00e9u<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

ERN de enfermedades \u00f3seas<\/span> raras (BOND)<\/span><\/td>\n

<\/p>\n

Dr Luca Sangiori\u00a0 Rizzoli Orthopaedic Institute, Bologna, Italy<\/td>\n

<\/p>\n

38<\/td>\n

<\/p>\n

\u00a0<\/td>\n

<\/p>\n

\u00a0<\/td>\n


\n<\/tr>\n

ERN de enfermedades de tejido conectivo y musculoesquel\u00e9ticas <\/span>raras (ReCONNET)<\/span><\/td>\n

<\/p>\n

Professor Marta Mosca AOU Pisan<\/td>\n

<\/p>\n

25<\/td>\n

<\/p>\n

\u00a0<\/td>\n

<\/p>\n

\u00a0<\/td>\n


\n<\/tr>\n

ERN de enfermedades renales<\/span> raras (ERKNet)<\/span><\/td>\n

<\/p>\n

Professor Franz Schaefer Universit\u00e4tsklinikum Heidelberg, Germany<\/td>\n

<\/p>\n

37<\/td>\n

<\/p>\n

Hospital Universitari Vall d’Hebron<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

ERN de anomal\u00edas hereditarias y cong\u00e9nitas raras<\/span> (ERNICA)<\/span><\/td>\n

<\/p>\n

Professor Rene Wijnen Erasmus MC: University Medical Center Rotterdam<\/td>\n

<\/p>\n

20<\/td>\n

<\/p>\n

\u00a0<\/td>\n

<\/p>\n

\u00a0<\/td>\n


\n<\/tr>\n

ERN de malformaciones cong\u00e9nitas raras y discapacidades intelectuales raras<\/span> (ITHACA)<\/span><\/td>\n

<\/p>\n

Professor Jill Clayton-Smith Central Manchester University Hospitals NHS Foundation Trust<\/td>\n

<\/p>\n

36<\/td>\n

<\/p>\n

\u00a0<\/td>\n

<\/p>\n

\u00a0<\/td>\n


\n<\/tr>\n

ERN de enfermedades hep\u00e1ticas<\/span> raras (RARE-LIVER)<\/span><\/td>\n

<\/p>\n

Professor David Jones The Newcastle upon Tyne Hospitals NHS Foundation Trust<\/td>\n

<\/p>\n

28<\/td>\n

<\/p>\n

Hospital Cl\u00ednic i Provincial de Barcelona<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitario La Paz<\/td>\n

<\/p>\n

Madrid<\/td>\n


\n<\/tr>\n

ERN de trasplante<\/span> infantil (TRANSCHILD)<\/span><\/td>\n

<\/p>\n

Dr Manuel L\u00f3pez Santamar\u00eda Hospital Universitario La Paz<\/td>\n

<\/p>\n

17<\/td>\n

<\/p>\n

Hospital Universitario La Paz<\/td>\n

<\/p>\n

Madrid<\/td>\n


\n<\/tr>\n

ERN de enfermedades cardiacas<\/span> poco comunes y raras (GUARD-HEART)<\/span><\/td>\n

<\/p>\n

Professor Arthur Wilde Academic Medical Center Amsterdam<\/td>\n

<\/p>\n

24<\/td>\n

<\/p>\n

Hospital de Sant Joan de D\u00e9u<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitario Puerta de Hierro Majadahonda<\/td>\n

<\/p>\n

Madrid<\/td>\n


\n<\/tr>\n

Hospital Universitario Virgen de la Arrixaca<\/td>\n

<\/p>\n

Murcia<\/td>\n


\n<\/tr>\n

ERN de enfermedades respiratorias<\/span> raras (ERN LUNG)<\/span><\/td>\n

<\/p>\n

Professor Thomas O.F. Wagner Universit\u00e4tsklinikum Frankfurt<\/td>\n

<\/p>\n

58<\/td>\n

<\/p>\n

Hospital Cl\u00ednic i Provincial de Barcelona<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitari Vall d’Hebron<\/td>\n

<\/p>\n

Catalu\u00f1a<\/td>\n


\n<\/tr>\n

Hospital Universitario 12 de Octubre<\/td>\n

<\/p>\n

Madrid<\/td>\n


\n<\/tr>\n

ERN de enfermedades vasculares<\/span> multisist\u00e9micas raras (VASCERN)<\/span><\/td>\n

<\/p>\n

Professor Guillaume Jondeau Assistance Publique-H\u00f4pitaux de Paris, H\u00f4pital Bichat<\/td>\n

<\/p>\n

31<\/td>\n

<\/p>\n

\u00a0<\/td>\n

<\/p>\n

\u00a0<\/td>\n


\n<\/tr>\n

ERN de enfermedades urogenitales<\/span> raras y complejas (ERN eUROGEN)<\/span><\/td>\n

<\/p>\n

Professor Christopher Chapple Sheffield Teaching Hospitals NHS Foundation Trust<\/td>\n

<\/p>\n

29<\/td>\n

<\/p>\n

\u00a0<\/td>\n

<\/p>\n

\u00a0<\/td>\n


\n<\/tr>\n<\/tbody>\n<\/table>\n

\u00a0<\/p>\n


\nSource: FEDER<\/p>\n","protected":false},"excerpt":{"rendered":"

El Ministerio de Sanidad, Servicios Sociales e Igualdad ha publicado informaci\u00f3n actualizada sobre el estado de situaci\u00f3n de las Redes Europeas de Referencia (ERNs) y, tambi\u00e9n, de los centros espa\u00f1oles[…]<\/a><\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"false","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_exactmetrics_skip_tracking":false,"_exactmetrics_sitenote_active":false,"_exactmetrics_sitenote_note":"","_exactmetrics_sitenote_category":0,"footnotes":""},"categories":[7],"tags":[24],"class_list":["post-2190","post","type-post","status-publish","format-standard","hentry","category-socios","tag-enfermedades-raras"],"_links":{"self":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/2190","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/comments?post=2190"}],"version-history":[{"count":0,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/posts\/2190\/revisions"}],"wp:attachment":[{"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/media?parent=2190"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/categories?post=2190"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aliber.org\/web\/wp-json\/wp\/v2\/tags?post=2190"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}