{"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 que participar\u00e1n de las mismas.\u00a0A d\u00eda de hoy existen 24 redes y Espa\u00f1a participa en 17 de ellas, destacando Catalu\u00f1a como la Comunidad Aut\u00f3noma con[…]<\/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,"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}]}}