{"id":3540,"date":"2018-02-16T13:36:04","date_gmt":"2018-02-16T13:36:04","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2018\/02\/16\/feder-se-adhiere-al-dia-nacional-de-niemann-pick\/"},"modified":"2018-02-16T13:36:04","modified_gmt":"2018-02-16T13:36:04","slug":"feder-se-adhiere-al-dia-nacional-de-niemann-pick","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2018\/02\/16\/feder-se-adhiere-al-dia-nacional-de-niemann-pick\/","title":{"rendered":"FEDER se adhiere al D\u00eda Nacional de Niemann Pick"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>El 17 de febrero se celebra el D\u00eda Nacional de Nienman Pick y FEDER quiere unirse este d\u00eda para apoyar a los pacientes que conviven con esta enfermedad y sus familias, dar visibilidad y reivindicar la necesidad de la investigaci\u00f3n de esta enfermedad rara.<\/p>\n<p>Precisamente este es el motivo que ha llevado a FEDER a centrar su campa\u00f1a por el D\u00eda Mundial de las Enfermedades Raras en la investigaci\u00f3n bajo el lema &#8216;Construyamos HOY para el MA\u00d1ANA&#8217;, ya que considera que a trav\u00e9s ella se puede avanzar en el conocimiento de las causas de las enfermedades raras y su tratamiento.<\/p>\n<p>El D\u00eda Nacional de Niemann Pick tiene como objetivo informar y sensibilizar sobre esta enfermedad rara neurodegenerativa y la importancia de la investigaci\u00f3n de las enfermedades raras.<\/p>\n<p>Niemann-Pick es una enfermedad neurodegenerativa y altamente incapacitante que afecta motora, cognitiva y visceralmente las funciones vitales de los pacientes. Esta es una enfermedad rara e incurable, pero tratable debido al uso de tratamientos paliativos que permiten mantener una calidad de vida aceptable y ralentizar su avance.<\/p>\n<p>Por esta raz\u00f3n, y en un d\u00eda como este, FEDER quiere poner de relieve el trabajo que realiza la Fundaci\u00f3n Niemann Pick de Espa\u00f1a, \u201cTodos con Natalia\u201d Luchando Contra la Enfermedad de Niemann Pick Tipo C, la Asociaci\u00f3n Juntos Podemos Vencer (Creada para investigar Niemann Pick tipo C) y la Asociaci\u00f3n Espa\u00f1ola contra la Histiocitosis para dar visibilidad y reinvidicar la necesidad de destinar fondos para la investigaci\u00f3n de esta enfermedad rara.<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n: 16 de febrero 2018.<\/p>\n<p>&nbsp;<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/10094-feder-se-adhiere-al-d%C3%ADa-nacional-de-niemann-pick\" target=\"_blank\">FEDER se adhiere al D\u00eda Nacional de Niemann Pick<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: El 17 de febrero se celebra el D\u00eda Nacional de Nienman Pick y FEDER quiere unirse este d\u00eda para apoyar a los pacientes que conviven con esta enfermedad y sus familias, dar visibilidad y reivindicar la necesidad de la investigaci\u00f3n de esta enfermedad [&hellip;]<\/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-3540","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - 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