{"id":7276,"date":"2021-06-11T07:30:21","date_gmt":"2021-06-11T07:30:21","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2021\/06\/11\/nos-unimos-al-dia-internacional-del-albinismo\/"},"modified":"2021-06-11T07:30:21","modified_gmt":"2021-06-11T07:30:21","slug":"nos-unimos-al-dia-internacional-del-albinismo","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2021\/06\/11\/nos-unimos-al-dia-internacional-del-albinismo\/","title":{"rendered":"Nos unimos al D\u00eda Internacional del Albinismo"},"content":{"rendered":"

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

 <\/p>\n

El 13 de junio se celebra el D\u00eda Internacional de la Sensibilizaci\u00f3n del Albinismo con el objetivo de concienciar a la sociedad y aumentar la comprensi\u00f3n sobre esta enfermedad poco frecuente. Es por ello que, FEDER se suma para luchar contra la discriminaci\u00f3n que actualmente todav\u00eda existe contra las personas que conviven con Albinismo.<\/p>\n

El albinismo es una condici\u00f3n gen\u00e9tica que determinan un fenotipo (apariencia f\u00edsica) muy caracter\u00edstico, debido a la ausencia o reducci\u00f3n de pigmentaci\u00f3n en la piel, ojos y pelo (hipopigmentaci\u00f3n).<\/p>\n

Se trata de una condici\u00f3n metab\u00f3lica poco habitual, debida a un defecto en el gen que se encarga de la s\u00edntesis y distribuci\u00f3n de la melanina.<\/p>\n

Las personas que tiene albinismo se caracterizan por tener el pelo blanco o ligeramente dorado, la piel muy p\u00e1lida o con un tono rosa. Adem\u00e1s, pueden tener una disminuci\u00f3n de la visi\u00f3n, mayor sensibilidad a las luces brillantes (fotofobia), movimiento involuntario de los ojos (nistagmus) y estrabismo.<\/p>\n

Desde la Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras queremos mostrar todo nuestro apoyo a las personas que conviven con albinismo y a sus familiares. Adem\u00e1s, aprovechamos este d\u00eda para recordar la importancia del diagn\u00f3stico precoz y la creaci\u00f3n de protocolos de actuaci\u00f3n destinados para esta enfermedad<\/p>\n

Las entidades que forman el movimiento asociativo realizan una labor esencial para todos los pacientes y familias ya que, desde asociaciones como, la Asociaci\u00f3n de Ayuda a Personas con Albinismo (ALBA) se crean grupos de apoyo para informar y orientar a los padres y madres.<\/p>\n

Campa\u00f1a de visibilizaci\u00f3n \u2018Miro por el Albinismo\u2019<\/span><\/p>\n

ALBA lanza en las redes sociales la campa\u00f1a \u201cMiro por el albinismo\u201d, una campa\u00f1a de visibilizaci\u00f3n, concienciaci\u00f3n y apoyo al albinismo. Su objetivo es transmitir el mensaje del colectivo y llenar las redes sociales con selfies de personas que miran por el albinismo. A\u00f1o a a\u00f1o, la participaci\u00f3n en esta campa\u00f1a crece y son m\u00e1s las personas que miran por el albinismo, consiguiendo con ello aumentar el conocimiento y concienciaci\u00f3n sobre esta condici\u00f3n gen\u00e9tica.<\/p>\n

S\u00famate a la campa\u00f1a \u201cmiro por el albinismo\u201d con un peque\u00f1o gesto: comparte en tus redes sociales un selfie se\u00f1al\u00e1ndote el ojo con el dedo y con el siguiente texto y etiquetas: \u201c13 de Junio, D\u00eda Internacional de la sensibilizaci\u00f3n sobre el #albinismo #MiroPorElAlbinismo #IAAD2021 #\u201cDICA2021\u201d #FortalezaFrenteaTodo #StrengthBeyondAllOdds<\/p>\n

\u00daltima actualizaci\u00f3n 11\/06\/2021<\/p>\n

 <\/p>\n

Fuente: FEDER Nos unimos al D\u00eda Internacional del Albinismo<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra:   El 13 de junio se celebra el D\u00eda Internacional de la Sensibilizaci\u00f3n del Albinismo con el objetivo de concienciar a la sociedad y aumentar la comprensi\u00f3n sobre esta enfermedad poco frecuente. Es por ello que, FEDER se suma para luchar contra la […]<\/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-7276","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"\nNos unimos al D\u00eda Internacional del Albinismo - 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\/2021\/06\/11\/nos-unimos-al-dia-internacional-del-albinismo\/\" \/>\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 del Albinismo - 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:   El 13 de junio se celebra el D\u00eda Internacional de la Sensibilizaci\u00f3n del Albinismo con el objetivo de concienciar a la sociedad y aumentar la comprensi\u00f3n sobre esta enfermedad poco frecuente. 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