{"id":4352,"date":"2019-04-22T07:17:50","date_gmt":"2019-04-22T07:17:50","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/04\/22\/david-sanchez-interviene-en-la-cadena-ser-por-nuestro-20-aniversario\/"},"modified":"2019-04-22T07:17:50","modified_gmt":"2019-04-22T07:17:50","slug":"david-sanchez-interviene-en-la-cadena-ser-por-nuestro-20-aniversario","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/04\/22\/david-sanchez-interviene-en-la-cadena-ser-por-nuestro-20-aniversario\/","title":{"rendered":"David S\u00e1nchez interviene en la Cadena Ser por nuestro 20 aniversario"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>Como ya sabeis, el pasado 17 de abril fue un d\u00eda muy importante para nosotros, ya que, la familia de FEDER cumpli\u00f3 20 a\u00f1os, dos d\u00e9cadas de lucha constante por aquellos tres millones de personas que conviven con una enfermedad poco frecuente en nuestro pa\u00eds. Lucha, que sin nuestro movimiento asociativo, formado por 358 asociaciones, no podr\u00eda haber sido posible.<\/p>\n<p>En este d\u00eda cargado de emociones y esperanza, nuestro compa\u00f1ero David S\u00e1nchez, miembro de la Junta Directiva, particip\u00f3 en el programa \u2018Hoy por Hoy\u2019 de la Cadena Ser donde tuvo la oportunidad de explicar a todos los oyentes la enfermedad poco frecuente que tiene, la retinosis pigmentaria, una distrofia hereditaria de la retina de car\u00e1cter degenerativo y progresivo. Adem\u00e1s, traslad\u00f3 los retos a los que se tiene que enfrentar d\u00eda tras d\u00eda, siempre contando con el apoyo incondicional de sus familiares y amigos.<\/p>\n<p>&nbsp;<\/p>\n<p>David no se quiso olvidar de nuestro aniversario y realiz\u00f3 una menci\u00f3n especial a todas las entidades, familias, federaciones y fundaciones que forman parte de nuestra federaci\u00f3n, que d\u00eda a d\u00eda pelean para conseguir objetivos comunes como la mejora de la calidad de vida de aquellas personas con enfermedades poco frecuentes, adem\u00e1s, de promover la investigaci\u00f3n cient\u00edfica de estas patolog\u00edas para conseguir una cura.<\/p>\n<p>Adem\u00e1s, nos queremos sumar a la reflexi\u00f3n final de David donde record\u00f3 que,&nbsp;<em><span style=\"font-size: 11.97px;font-weight: normal;line-height: 15.561px\">\u201cNadie est\u00e1 exento de poder convivir con una de estas enfermedades llamadas raras y que las raras son las enfermedades, no las personas<\/span><\/em><span style=\"font-size: 11.97px;line-height: 1.3\"><em>\u201d<\/em>.<\/span><\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 22\/04\/2019<\/p>\n<p>&nbsp;<\/p>\n<p style=\"text-align: right\">&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12153-david-s%C3%A1nchez-interviene-en-la-cadena-ser-por-nuestro-20-aniversario\" target=\"_blank\" rel=\"noopener noreferrer\">David S\u00e1nchez interviene en la Cadena Ser por nuestro 20 aniversario<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Como ya sabeis, el pasado 17 de abril fue un d\u00eda muy importante para nosotros, ya que, la familia de FEDER cumpli\u00f3 20 a\u00f1os, dos d\u00e9cadas de lucha constante por aquellos tres millones de personas que conviven con una enfermedad poco frecuente en [&hellip;]<\/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-4352","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - 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