{"id":964,"date":"2015-03-01T18:48:06","date_gmt":"2015-03-01T18:48:06","guid":{"rendered":"http:\/\/lupusgalicia.org\/?p=964"},"modified":"2015-03-01T18:48:16","modified_gmt":"2015-03-01T18:48:16","slug":"28-de-febrero-dia-mundial-de-las-enfermedades-raras","status":"publish","type":"post","link":"https:\/\/lupusgalicia.org\/?p=964","title":{"rendered":"28 de febrero Dia Mundial de las Enfermedades Raras"},"content":{"rendered":"

Vigo baila bajo la lluvia<\/span><\/h1>\n

Decenas de personas protagonizan un Flashmob en el centro de la ciudad en homenaje a las enfermedades raras<\/span><\/h2>\n

Algo raro se mueve en Vigo. Pero en forma de hashtag. <\/span><\/h1>\n

Era la etiqueta que promocionaba un nuevo baile en pleno coraz\u00f3n de la ciudad ol\u00edvica. Como el que tuvo lugar en Pr\u00edncipe en las fechas navide\u00f1as. Este si cabe era mucho m\u00e1s emotivo. El objetivo de este Flashmob era dar a conocer las enfermedades raras, \u00abhacer visible lo invisible<\/em>\u00bb afirmaban los organizadores, Medicalesp.<\/p>\n

\"1425155993208\"<\/a><\/p>\n

La cita era a las 19:00 horas. Decenas de personas desafiaban a las malas condiciones meteorol\u00f3gicas y desataban su pasi\u00f3n por la m\u00fasica bailando en plena Praza da Constituci\u00f3n. Era el momento de demostrar que se sab\u00eda la coreograf\u00eda. Cuatro minutos de baile para homenajear a aquellas personas que sufren alguna de las denominadas como enfermedades raras. Con humor. Con una sonrisa. La mejor manera, sin duda, de hacer visible este tipo de dolencias que afectan ya a m\u00e1s de tres millones de personas en Espa\u00f1a.<\/p>\n

Noticia publicada en FARO DE VIGO<\/a>. (28.02.15) \u00a0\u00a0Ver la GALER\u00cdA<\/a><\/p>\n

Tambi\u00e9n hablando sobre Vigo :<\/p>\n

Los vigueses bailaron bajo la lluvia por las enfemedades raras<\/span><\/h1>\n
\n

Juan Dasilva (presidente de la Asociaci\u00f3n Gallega de Fibrosis Qu\u00edstica) : \u201cNos cambi\u00f3 la vida, queremos que nuestra hija tenga una vida como los dem\u00e1s<\/em>\u201d<\/p>\n

El concejal Santos H\u00e9ctor contempl\u00f3 el espect\u00e1culo, acompa\u00f1ado por la presidenta de \u00a0Fegerec, Francisca Luengo. En Espa\u00f1a son 3 millones de pacientes y en Galicia 200.000, ayer muy visibles.
\nAlberto Pe\u00f1a (MedicalESP) se mostr\u00f3 ayer muy satisfecho y sorprendido por la alta participaci\u00f3n. \u201cCre\u00edamos que Vigo se pod\u00eda mojar por esto y aqu\u00ed est\u00e1 el resultado<\/em>\u201d.<\/p>\n

Para leer m\u00e1s de esta noticia ve a Atlantico.net<\/a><\/p>\n<\/div>\n

\"2015030101181435821\"<\/a><\/p>\n

Otra noticia relacionada:<\/p>\n

M\u00e1s de 200.000 personas en Galicia padecen alguna enfermedad rara.<\/span><\/h1>\n

Imagine que un d\u00eda empieza a sentirse mal, a fatigarse sin motivo, a padecer alg\u00fan dolor que no se va, a ver mermado alguno de sus sentidos. Imagine que acude al m\u00e9dico y este no sabe decirle qu\u00e9 le ocurre pese a someterse a un rosario de pruebas diagn\u00f3sticas que van descartando patolog\u00edas sin poder concretar la suya. El tiempo pasa, su deterioro aumenta y ni siquiera sabe a qu\u00e9 se debe. Es algo horrible. Ahora imagine que eso, en vez de ocurrirle a usted, le ocurre a su hijo.<\/p>\n

Para seguir leyendo haz click en \u00a0La Voz de Galicia<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Vigo baila bajo la lluvia Decenas de personas protagonizan un Flashmob en el centro de la ciudad en homenaje a las enfermedades raras Algo raro se mueve en Vigo. Pero en forma de hashtag. Era la etiqueta que promocionaba un nuevo baile en pleno coraz\u00f3n de la ciudad ol\u00edvica. Como el que tuvo lugar en […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"categories":[1],"tags":[15,12],"class_list":["post-964","post","type-post","status-publish","format-standard","hentry","category-uncategorized","tag-apoyo","tag-ee-raras"],"yoast_head":"\r\n28 de febrero Dia Mundial de las Enfermedades Raras - Asociaci\u00f3n Galega de Lupus<\/title>\r\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\r\n<link rel=\"canonical\" href=\"https:\/\/lupusgalicia.org\/?p=964\" \/>\r\n<meta property=\"og:locale\" content=\"es_ES\" \/>\r\n<meta property=\"og:type\" content=\"article\" \/>\r\n<meta property=\"og:title\" content=\"28 de febrero Dia Mundial de las Enfermedades Raras - Asociaci\u00f3n Galega de Lupus\" \/>\r\n<meta property=\"og:description\" content=\"Vigo baila bajo la lluvia Decenas de personas protagonizan un Flashmob en el centro de la ciudad en homenaje a las enfermedades raras Algo raro se mueve en Vigo. 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