{"id":4442,"date":"2019-05-30T05:49:24","date_gmt":"2019-05-30T05:49:24","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2019\/05\/30\/nos-unimos-al-dia-internacional-de-sindrome-prader-willi\/"},"modified":"2019-05-30T05:49:24","modified_gmt":"2019-05-30T05:49:24","slug":"nos-unimos-al-dia-internacional-de-sindrome-prader-willi","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2019\/05\/30\/nos-unimos-al-dia-internacional-de-sindrome-prader-willi\/","title":{"rendered":"Nos unimos al D\u00eda Internacional de S\u00edndrome Prader Willi"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>Hoy se celebra el D\u00eda Internacional del S\u00edndrome Prader Willi con el objetivo de concienciar a la sociedad sobre esta enfermedad poco frecuente que tiene una incidencia estimada de 1 por cada 15.000 reci\u00e9n nacidos. En esta jornada de visibilizaci\u00f3n, nos queremos unir para&nbsp;&nbsp;mostrar todo nuestro apoyo a las personas que conviven con S\u00edndrome Prader Willi y a sus familiares. Adem\u00e1s, queremos recordar la importancia de trabajar juntos para mejorar la calidad de vida de los pacientes<\/p>\n<p>Desde FEDER queremos realzar la labor que la Asociaci\u00f3n Espa\u00f1ola del S\u00edndrome Prader Willi que tiene como objetivos principales la protecci\u00f3n, la asistencia a los pacientes y familias, la prevenci\u00f3n educativa e integraci\u00f3n social de las personas que conviven con esta enfermedad poco frecuente. Adem\u00e1s, con motivo del D\u00eda Mundial, esta entidad ha compartido en sus redes sociales, un v\u00eddeo explicativo sobre la enfermedad y la labor que realizan desde la asociaci\u00f3n, el cual te dejamos adjunto a la noticia. Por otro lado, animan a todo el mundo a compartir informaci\u00f3n sobre el S\u00edndrome Prader Willi en sus redes sociales bajo la etiqueta #Cuentaconmigo.<\/p>\n<p>Por otro lado, FEDER tambi\u00e9n queremos aplaudir el trabajo diario que realizan entidades como, la Asociaci\u00f3n Valenciana S\u00edndrome Prader Willi, la Asociaci\u00f3n Catalana para el S\u00edndrome de Prader Willi, la Asociaci\u00f3n del S\u00edndrome de Prader Willi de Andaluc\u00eda, la Asociaci\u00f3n de Addison y Otras Enfermedades Endocrinas (ADISEN), la Asociaci\u00f3n de Ayuda Mutua PANIDE, la Asociaci\u00f3n Grupo de Enfermedades Raras de Navarra, la Asociaci\u00f3n Humanitaria de Enfermedades Degenerativas y S\u00edndromes de la Infancia y Adolescencia, la Asociaci\u00f3n de Personas y Enfermedades Raras de Arag\u00f3n y la Asociaci\u00f3n de Enfermedades Raras de Benidorm y comarca<\/p>\n<p><span style=\"text-decoration: underline\"><span style=\"font-size: 12pt\">\u00bfQu\u00e9 es el S\u00edndrome Prader Willi?<\/span><\/span><\/p>\n<p>Es una enfermedad rara con una expresi\u00f3n cl\u00ednica gen\u00e9tica compleja que afecta a m\u00faltiples sistemas del organismo. Se manifiesta al nacer por una debilidad muscular (hipoton\u00eda neonatal) dando lugar a dificultades de alimentaci\u00f3n en los reci\u00e9n nacidos. Posteriormente desarrollan una hiperfagia con falta de sensaci\u00f3n de saciedad. Es por ello que necesitan ingerir menos calor\u00edas de lo normal y tienen que seguir siempre una dieta estricta en calor\u00edas con actividad f\u00edsica regular no para desarrollar una obesidad que ponga su vida en peligro.<\/p>\n<p>Estas personas tienen un retraso en el desarrollo, dificultad de aprendizaje (variable) que hace que necesiten apoyo en la escuela, tambi\u00e9n problemas de conducta, un alto umbral de resistencia al dolor, trastorno del sue\u00f1o y talla baja (si no reciben el tratamiento con hormona del crecimiento).<\/p>\n<p style=\"text-align: right\">\u00daltima actualizaci\u00f3n 30\/05\/2019<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/12419-nos-unimos-al-d%C3%ADa-internacional-de-s%C3%ADndrome-prader-willi\" target=\"_blank\" rel=\"noopener noreferrer\">Nos unimos al D\u00eda Internacional de S\u00edndrome Prader Willi<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: Hoy se celebra el D\u00eda Internacional del S\u00edndrome Prader Willi con el objetivo de concienciar a la sociedad sobre esta enfermedad poco frecuente que tiene una incidencia estimada de 1 por cada 15.000 reci\u00e9n nacidos. En esta jornada de visibilizaci\u00f3n, nos queremos unir [&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-4442","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Nos unimos al D\u00eda Internacional de S\u00edndrome Prader Willi - 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\/05\/30\/nos-unimos-al-dia-internacional-de-sindrome-prader-willi\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Nos unimos al D\u00eda Internacional de S\u00edndrome Prader Willi - 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: Hoy se celebra el D\u00eda Internacional del S\u00edndrome Prader Willi con el objetivo de concienciar a la sociedad sobre esta enfermedad poco frecuente que tiene una incidencia estimada de 1 por cada 15.000 reci\u00e9n nacidos. 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