{"id":1436,"date":"2015-10-26T06:17:50","date_gmt":"2015-10-26T06:17:50","guid":{"rendered":"http:\/\/sindromecharge.es\/index.php\/2015\/10\/26\/feder-suma-su-apoyo-a-quienes-conviven-con-piel-de-mariposa\/"},"modified":"2015-10-26T06:17:50","modified_gmt":"2015-10-26T06:17:50","slug":"feder-suma-su-apoyo-a-quienes-conviven-con-piel-de-mariposa","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2015\/10\/26\/feder-suma-su-apoyo-a-quienes-conviven-con-piel-de-mariposa\/","title":{"rendered":"FEDER suma su apoyo a quienes conviven con Piel de Mariposa"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p>La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) ha querido adherirse al D\u00eda Internacional de Piel de Mariposa que se celebra el 25 de octubre, con el fin de mostrar todo su apoyo a quienes conviven con la tambi\u00e9n llamada Epiderm\u00f3lisis bullosa (EB).<\/p>\n<p>Se trata una enfermedad de tipo gen\u00e9tico que provoca una extrema fragilidad cut\u00e1nea hasta el punto que un abrazo puede causar lesiones como ampollas y heridas. Se dice que su piel es tan fr\u00e1gil como las alas de una mariposa, de ah\u00ed su nombre.<\/p>\n<p>\u201cDesde FEDER, queremos trasladar todo apoyo a las 1.000 personas que, se estima, conviven con Piel de Mariposa en Espa\u00f1a\u201d, ha explicado Juan Carri\u00f3n, Presidente de FEDER, sum\u00e1ndose a la causa.<\/p>\n<p>Desde la Asociaci\u00f3n Piel de Mariposa (DEBRA Espa\u00f1a) han organizado diferentes actividades en torno a este d\u00eda. Concretamente, durante esta jornada han podido estrenar un documental sobre la enfermedad pionero en Espa\u00f1a. A trav\u00e9s de esta producci\u00f3n, \u201cla Asociaci\u00f3n busca ofrecer una visi\u00f3n realista y esperanzadora de quienes conviven con EB\u201d, ha explicado Mar\u00eda Elena Escalante, Delegada de FEDER en Madrid, que asisti\u00f3 al pre-estreno de este documental en el CaixaForum de Madrid.<\/p>\n<p>El mismo 25 de octubre, el documental se estren\u00f3 mundialmente. Desc\u00fabrelo aqu\u00ed: <a href=\"http:\/\/www.docupieldemariposa.es\/\">http:\/\/www.docupieldemariposa.es\/<\/a><\/p>\n<p>Fuente: FEDER <a href=\"http:\/\/www.enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/4855-feder-suma-su-apoyo-a-quienes-conviven-con-piel-de-mariposa\" target=\"_blank\">FEDER suma su apoyo a quienes conviven con Piel de Mariposa<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) ha querido adherirse al D\u00eda Internacional de Piel de Mariposa que se celebra el 25 de octubre, con el fin de mostrar todo su apoyo a quienes conviven con la tambi\u00e9n llamada Epiderm\u00f3lisis bullosa (EB). Se [&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-1436","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>FEDER suma su apoyo a quienes conviven con Piel de Mariposa - 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\/2015\/10\/26\/feder-suma-su-apoyo-a-quienes-conviven-con-piel-de-mariposa\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"FEDER suma su apoyo a quienes conviven con Piel de Mariposa - 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: La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) ha querido adherirse al D\u00eda Internacional de Piel de Mariposa que se celebra el 25 de octubre, con el fin de mostrar todo su apoyo a quienes conviven con la tambi\u00e9n llamada Epiderm\u00f3lisis bullosa (EB). 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