{"id":2718,"date":"2017-04-03T05:54:57","date_gmt":"2017-04-03T05:54:57","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2017\/04\/03\/conoce-la-participacion-de-espana-dentro-de-las-erns\/"},"modified":"2017-04-03T05:54:57","modified_gmt":"2017-04-03T05:54:57","slug":"conoce-la-participacion-de-espana-dentro-de-las-erns","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/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":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n

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. <\/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

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

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

Redes Europeas de Referencia<\/h3>\n<\/td>\n

\n

Coordinador<\/h3>\n<\/td>\n

\n

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

\n

Centros espa\u00f1oles<\/h3>\n<\/td>\n

\n

CCAA<\/h3>\n<\/td>\n<\/tr>\n

ERN de s\u00edndromes gen\u00e9ticos con riesgo tumoral (<\/span>ERN GENTURIS)<\/span><\/td>\nProf. Nicoline Hoogerbrugge Radboud University Medical Center Nijmegen<\/td>\n23<\/td>\nHospital Universitari Germans Trias i Pujol y ICO Badalona<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital de Sant Joan de D\u00e9u<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
ERN de c\u00e1nceres raros en adultos <\/span>(EURACAN)<\/span><\/td>\nProfessor Jean-Yves Blay Centre L\u00e9on B\u00e9rard<\/td>\n65<\/td>\nComplejo Hospitalario Regional Virgen del Roc\u00edo<\/td>\nAndaluc\u00eda<\/td>\n<\/tr>\n
Hospital de la Santa Creu i Sant Pau<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
ICO L\u00b4Hospitalet y Hospital Universitari de Bellvitge<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
ERN de c\u00e1ncer pedi\u00e1trico<\/span> (hemato-oncol\u00f3gico) (PaedCan-ERN)<\/span><\/td>\nProfessor Ruth Ladenstein St. Anna Kinderspital & St. Anna Kinderkrebsforschung<\/td>\n57<\/td>\nComplejo Hospitalario Regional Virgen del Roc\u00edo<\/td>\nAndaluc\u00eda<\/td>\n<\/tr>\n
Hospital de Sant Joan de D\u00e9u<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitari Vall d’Hebron<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitario y Polit\u00e9cnico La Fe<\/td>\nComunidad Valenciana<\/td>\n<\/tr>\n
ERN de enfermedades hematol\u00f3gicas<\/span> raras (EuroBloodNet)<\/span><\/td>\nProfessor Pierre Fenaux Assistance Publique-H\u00f4pitaux de Paris, H\u00f4pital Saint-Louis<\/td>\n66<\/td>\nHospital Universitari Vall d’Hebron<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
ERN de inmunodeficiencias y enfermedades autoinflamatorias y autoinmunes<\/span> raras (RITA)<\/span><\/td>\nProfessor Andrew Cant The Newcastle upon Tyne Hospitals NHS Foundation Trust<\/td>\n24<\/td>\nHospital Universitari Vall d’Hebron<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
ERN de enfermedades endocrinas<\/span> raras (Endo-ERN)<\/span><\/td>\nProfessor Alberto M. Pereira
Leiden University Medical Center<\/td>\n		69<\/td>\nHospital de Sant Joan de D\u00e9u <\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitari Vall d’Hebron <\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitario de Cruces<\/td>\nPa\u00eds Vasco<\/td>\n<\/tr>\n
ERN de trastornos metab\u00f3licos<\/span> hereditarios raros (MetabERN)<\/span><\/td>\nProfessor Maurizio Scarpa Helios Dr. Horst Schmidt Kliniken<\/td>\n68<\/td>\nComplexo Hospitalario Universitario de Santiago<\/td>\nGalicia<\/td>\n<\/tr>\n
Hospital de Sant Joan de D\u00e9u<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitari Vall d’Hebron<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitario 12 de Octubre<\/td>\nMadrid<\/td>\n<\/tr>\n
Hospital Universitario de Cruces<\/td>\nPa\u00eds Vasco<\/td>\n<\/tr>\n
ERN de epilepsias complejas y raras<\/span> (EpiCARE)<\/span><\/td>\nProfessor Helen Cross Great Ormond Street Hospital for Children NHS Foundation Trust<\/td>\n28<\/td>\nHospital Cl\u00ednic i Provincial de Barcelona y Hospital de Sant Joan de D\u00e9u<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital del Mar<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitario y Polit\u00e9cnico La Fe<\/td>\nComunidad Valenciana<\/td>\n<\/tr>\n
ERN de enfermedades neurol\u00f3gicas<\/span> raras (ERN-RND)<\/span><\/td>\nDr Holm Graessner Universit\u00e4tsklinikum T\u00fcbingen<\/td>\n31<\/td>\nHospital Cl\u00ednic i Provincial de Barcelona y Hospital de Sant Joan de D\u00e9u<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitari Vall d’Hebron<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
ERN de enfermedades neuromusculares<\/span> raras (EURO-NMD)<\/span><\/td>\nProfessor Kate Bushby The Newcastle upon Tyne Hospitals NHS Foundation Trust<\/td>\n60<\/td>\nComplejo Hospitalario Regional Virgen del Roc\u00edo<\/td>\nAndaluc\u00eda<\/td>\n<\/tr>\n
Hospital de la Santa Creu i Sant Pau<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital de Sant Joan de D\u00e9u<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitari Vall d’Hebron<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitario y Polit\u00e9cnico La Fe<\/td>\nComunidad Valenciana<\/td>\n<\/tr>\n
ERN de enfermedades oftalmol\u00f3gicas<\/span> raras (ERN-EYE)<\/span><\/td>\nProfessor H\u00e9l\u00e8ne Dollfus H\u00f4pitaux Universitaires de Strasbourg<\/td>\n30<\/td>\n <\/td>\n <\/td>\n<\/tr>\n
ERN de anomal\u00edas craneofaciales y enfermedades otorrinolaringol\u00f3gicas<\/span> raras (CRANIO)<\/span><\/td>\nProfessor Irene Mathijssen Erasmus MC: University Medical Center Rotterdam<\/td>\n29<\/td>\nHospital Universitario 12 de Octubre<\/td>\nMadrid<\/td>\n<\/tr>\n
Hospital Universitari Vall d’Hebron<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
ERN de enfermedades dermatol\u00f3gicas<\/span> raras y no diagnosticadas (ERN-Skin)<\/span><\/td>\nProfessor Christine Bodemer Assistance Publique-H\u00f4pitaux de Paris, H\u00f4pital Necker-Enfants Malades<\/td>\n53<\/td>\nHospital Cl\u00ednic i Provincial de Barcelona y Hospital de Sant Joan de D\u00e9u<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
ERN de enfermedades \u00f3seas<\/span> raras (BOND)<\/span><\/td>\nDr Luca Sangiori  Rizzoli Orthopaedic Institute, Bologna, Italy<\/td>\n38<\/td>\n <\/td>\n <\/td>\n<\/tr>\n
ERN de enfermedades de tejido conectivo y musculoesquel\u00e9ticas <\/span>raras (ReCONNET)<\/span><\/td>\nProfessor Marta Mosca AOU Pisan<\/td>\n25<\/td>\n <\/td>\n <\/td>\n<\/tr>\n
ERN de enfermedades renales<\/span> raras (ERKNet)<\/span><\/td>\nProfessor Franz Schaefer Universit\u00e4tsklinikum Heidelberg, Germany<\/td>\n37<\/td>\nHospital Universitari Vall d’Hebron<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
ERN de anomal\u00edas hereditarias y cong\u00e9nitas raras<\/span> (ERNICA)<\/span><\/td>\nProfessor Rene Wijnen Erasmus MC: University Medical Center Rotterdam<\/td>\n20<\/td>\n <\/td>\n <\/td>\n<\/tr>\n
ERN de malformaciones cong\u00e9nitas raras y discapacidades intelectuales raras<\/span> (ITHACA)<\/span><\/td>\nProfessor Jill Clayton-Smith Central Manchester University Hospitals NHS Foundation Trust<\/td>\n36<\/td>\n <\/td>\n <\/td>\n<\/tr>\n
ERN de enfermedades hep\u00e1ticas<\/span> raras (RARE-LIVER)<\/span><\/td>\nProfessor David Jones The Newcastle upon Tyne Hospitals NHS Foundation Trust<\/td>\n28<\/td>\nHospital Cl\u00ednic i Provincial de Barcelona<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitario La Paz<\/td>\nMadrid<\/td>\n<\/tr>\n
ERN de trasplante<\/span> infantil (TRANSCHILD)<\/span><\/td>\nDr Manuel L\u00f3pez Santamar\u00eda Hospital Universitario La Paz<\/td>\n17<\/td>\nHospital Universitario La Paz<\/td>\nMadrid<\/td>\n<\/tr>\n
ERN de enfermedades cardiacas<\/span> poco comunes y raras (GUARD-HEART)<\/span><\/td>\nProfessor Arthur Wilde Academic Medical Center Amsterdam<\/td>\n24<\/td>\nHospital de Sant Joan de D\u00e9u<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitario Puerta de Hierro Majadahonda<\/td>\nMadrid<\/td>\n<\/tr>\n
Hospital Universitario Virgen de la Arrixaca<\/td>\nMurcia<\/td>\n<\/tr>\n
ERN de enfermedades respiratorias<\/span> raras (ERN LUNG)<\/span><\/td>\nProfessor Thomas O.F. Wagner Universit\u00e4tsklinikum Frankfurt<\/td>\n58<\/td>\nHospital Cl\u00ednic i Provincial de Barcelona<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitari Vall d’Hebron<\/td>\nCatalu\u00f1a<\/td>\n<\/tr>\n
Hospital Universitario 12 de Octubre<\/td>\nMadrid<\/td>\n<\/tr>\n
ERN de enfermedades vasculares<\/span> multisist\u00e9micas raras (VASCERN)<\/span><\/td>\nProfessor Guillaume Jondeau Assistance Publique-H\u00f4pitaux de Paris, H\u00f4pital Bichat<\/td>\n31<\/td>\n <\/td>\n <\/td>\n<\/tr>\n
ERN de enfermedades urogenitales<\/span> raras y complejas (ERN eUROGEN)<\/span><\/td>\nProfessor Christopher Chapple Sheffield Teaching Hospitals NHS Foundation Trust<\/td>\n29<\/td>\n <\/td>\n <\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n

 <\/p>\n

Fuente: FEDER Conoce la participaci\u00f3n de Espa\u00f1a dentro de las ERNs<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: 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. A d\u00eda de hoy existen 24 redes y Espa\u00f1a […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-2718","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\nConoce la participaci\u00f3n de Espa\u00f1a dentro de las ERNs - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/sindromecharge.es\/index.php\/2017\/04\/03\/conoce-la-participacion-de-espana-dentro-de-las-erns\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Conoce la participaci\u00f3n de Espa\u00f1a dentro de las ERNs - Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"og:description\" content=\"Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: 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. A d\u00eda de hoy existen 24 redes y Espa\u00f1a […]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/sindromecharge.es\/index.php\/2017\/04\/03\/conoce-la-participacion-de-espana-dentro-de-las-erns\/\" \/>\n<meta property=\"og:site_name\" content=\"Asociaci\u00f3n Espa\u00f1ola S\u00edndrome de Charge\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/asociacionsindromecharge\" \/>\n<meta property=\"article:published_time\" content=\"2017-04-03T05:54:57+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/sindromecharge.es\/wp-content\/uploads\/2013\/09\/logodecharge300x98.png\" \/>\n\t<meta property=\"og:image:width\" content=\"300\" \/>\n\t<meta property=\"og:image:height\" content=\"98\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/png\" \/>\n<meta name=\"author\" content=\"Charge\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@sindromecharge\" \/>\n<meta name=\"twitter:site\" content=\"@sindromecharge\" \/>\n<meta name=\"twitter:label1\" content=\"Escrito por\" \/>\n\t<meta name=\"twitter:data1\" content=\"Charge\" \/>\n\t<meta name=\"twitter:label2\" content=\"Tiempo de lectura\" \/>\n\t<meta name=\"twitter:data2\" content=\"5 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/04\\\/03\\\/conoce-la-participacion-de-espana-dentro-de-las-erns\\\/#article\",\"isPartOf\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/04\\\/03\\\/conoce-la-participacion-de-espana-dentro-de-las-erns\\\/\"},\"author\":{\"name\":\"Charge\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/#\\\/schema\\\/person\\\/39a60ebe0a2b4d5a11179701e336b039\"},\"headline\":\"Conoce la participaci\u00f3n de Espa\u00f1a dentro de las ERNs\",\"datePublished\":\"2017-04-03T05:54:57+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/04\\\/03\\\/conoce-la-participacion-de-espana-dentro-de-las-erns\\\/\"},\"wordCount\":980,\"commentCount\":0,\"keywords\":[\"enfermedades raras\"],\"articleSection\":[\"noticias\"],\"inLanguage\":\"es\",\"potentialAction\":[{\"@type\":\"CommentAction\",\"name\":\"Comment\",\"target\":[\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/04\\\/03\\\/conoce-la-participacion-de-espana-dentro-de-las-erns\\\/#respond\"]}]},{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/04\\\/03\\\/conoce-la-participacion-de-espana-dentro-de-las-erns\\\/\",\"url\":\"https:\\\/\\\/sindromecharge.es\\\/index.php\\\/2017\\\/04\\\/03\\\/conoce-la-participacion-de-espana-dentro-de-las-erns\\\/\",\"name\":\"Conoce la participaci\u00f3n de Espa\u00f1a dentro de las ERNs - 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