{"id":4228,"date":"2019-02-20T07:14:45","date_gmt":"2019-02-20T07:14:45","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/02\/20\/somos-protagonistas-de-la-loteria-nacional\/"},"modified":"2019-02-20T07:14:45","modified_gmt":"2019-02-20T07:14:45","slug":"somos-protagonistas-de-la-loteria-nacional","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/02\/20\/somos-protagonistas-de-la-loteria-nacional\/","title":{"rendered":"\u00a1Somos protagonistas de la Loter\u00eda Nacional!"},"content":{"rendered":"

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

El D\u00eda Mundial de las Enfermedades Raras ser\u00e1 el protagonista, este s\u00e1bado 23 de febrero, del sorteo de la Sociedad Estatal de Loter\u00edas y Apuestas (SELAE), quien se vuelca con esta causa que, a nivel nacional, representa a alrededor de 3 millones de personas.<\/p>\n

SELAE se une as\u00ed a la campa\u00f1a \u2018Las enfermedades raras, un desaf\u00edo integral, un desaf\u00edo global\u2019 impulsada por la Federaci\u00f3n Espa\u00f1ola que representa a estas patolog\u00edas (FEDER) en el marco de la conmemoraci\u00f3n de esta fecha que se celebra cada 28 de febrero (29 en a\u00f1os bisiestas).<\/p>\n

\u00abEl impacto de nuestra campa\u00f1a se multiplica as\u00ed gracias al apoyo de SELAE\u00bb ha agradecido Juan Carri\u00f3n, Presidente de FEDER y su Fundaci\u00f3n, teniendo en cuenta que la sociedad cuenta con m\u00e1s de 50 delegaciones comerciales y m\u00e1s 10.000 puntos de venta.<\/p>\n

Las enfermedades raras, un desaf\u00edo integral y global<\/h3>\n

Con esta campa\u00f1a que FEDER aterriza en Espa\u00f1a, se busca dar un car\u00e1cter a\u00fan m\u00e1s internacional si cabe a esta iniciativa al buscar un reconocimiento a nivel internacional de estas patolog\u00edas y fomentar un trabajo en red entre los diferentes pa\u00edses para abordar su tratamiento.<\/p>\n

Desde FEDER, as\u00ed como desde La Organizaci\u00f3n Europea de Enfermedades Raras (EURORDIS), la Alianza Iberoamericana de Enfermedades Raras, (ALIBER) y la Red Internacional de Enfermedades Raras (RDI) se considera, tal como declara el lema de este a\u00f1o que la intervenci\u00f3n en estas patolog\u00edas ha de ser integral porque su complejidad y baja prevalencia hace necesarios una alta especializaci\u00f3n y concentraci\u00f3n de casos, multidisciplinariedad y experiencia para su prevenci\u00f3n, diagn\u00f3stico y tratamiento. <\/p>\n

Adem\u00e1s, se ha querido recalcar qu\u00e9 esto ha de hacerse con una perspectiva global ya que aunque existen m\u00e1s de 7.000 enfermedades raras identificadas en todo el mundo y cada una enfrenta una amplia diversidad de s\u00edntomas, todas ellas enfrentan una problem\u00e1tica com\u00fan, independientemente del lugar o pa\u00eds de residencia de quien convive con ella.<\/p>\n

\u00daltima actualizaci\u00f3n: 20\/02\/2019.<\/p>\n<\/p>\n

Fuente: FEDER \u00a1Somos protagonistas de la Loter\u00eda Nacional!<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El D\u00eda Mundial de las Enfermedades Raras ser\u00e1 el protagonista, este s\u00e1bado 23 de febrero, del sorteo de la Sociedad Estatal de Loter\u00edas y Apuestas (SELAE), quien se vuelca con esta causa que, a nivel nacional, representa a alrededor de 3 millones de […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[8],"tags":[36],"class_list":["post-4228","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\n\u00a1Somos protagonistas de la Loter\u00eda Nacional! - 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\/2019\/02\/20\/somos-protagonistas-de-la-loteria-nacional\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u00a1Somos protagonistas de la Loter\u00eda Nacional! 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