{"id":6297,"date":"2020-10-22T10:05:32","date_gmt":"2020-10-22T10:05:32","guid":{"rendered":"https:\/\/sindromecharge.es\/index.php\/2020\/10\/22\/nos-solidarizamos-con-los-pacientes-y-familiares-que-conviven-con-sindrome-de-kabuki-en-su-dia-mundial\/"},"modified":"2020-10-22T10:05:32","modified_gmt":"2020-10-22T10:05:32","slug":"nos-solidarizamos-con-los-pacientes-y-familiares-que-conviven-con-sindrome-de-kabuki-en-su-dia-mundial","status":"publish","type":"post","link":"https:\/\/sindromecharge.es\/index.php\/2020\/10\/22\/nos-solidarizamos-con-los-pacientes-y-familiares-que-conviven-con-sindrome-de-kabuki-en-su-dia-mundial\/","title":{"rendered":"Nos solidarizamos con los pacientes y familiares que conviven con S\u00edndrome de Kabuki en su D\u00eda Mundial"},"content":{"rendered":"<p>Leemos en FEDER la siguiente noticia que os reproducimos de forma \u00edntegra: <\/p>\n<p><p>La Federaci\u00f3n Espa\u00f1ola de Enfermedades Raras (FEDER) se suma al D\u00eda Internacional del S\u00edndrome de Kabuki, que se celebrar\u00e1 ma\u00f1ana, para apoyar al colectivo de pacientes que conviven con esta enfermedad poco frecuente y a las entidades del movimiento asociativo.<\/p>\n<p>\u201cDesde FEDER nos queremos unir a esta jornada para reconocer el trabajo de las asociaciones que luchan para mejorar la calidad de vida de las personas con S\u00edndrome de Kabuki. Adem\u00e1s, queremos transmitir toda nuestra fuerza a los pacientes y familiares.\u201d Afirma Juan Carri\u00f3n, Presidente de FEDER y su Fundaci\u00f3n.<\/p>\n<p>El S\u00edndrome de Kabuki es una condici\u00f3n gen\u00e9tica rara que generalmente se relaciona con un tono muscular bajo, crecimiento posnatal lento, retraso en el desarrollo y dificultades de aprendizaje leves a moderadas.<\/p>\n<p>Las personas con Kabuki son m\u00e1s propensas que la mayor\u00eda de las personas a verse afectadas por una serie de afecciones m\u00e9dicas y muestran caracter\u00edsticas musculoesquel\u00e9ticas y faciales distintivas.<br \/>El trabajo de las entidades es esencial para garantizar el bienestar del colectivo de pacientes y de familiares, ya que, se esfuerzan para impulsar la divulgaci\u00f3n del s\u00edndrome, crean lugares de encuentro para el entorno de las personas con esta enfermedad poco frecuente con el objetivo de compartir experiencias y ofrecer apoyo. Esto es posible, gracias a la labor de asociaciones como la Asociaci\u00f3n Espa\u00f1ola de Familiares y Afectados por el S\u00edndrome de Kabuki.<\/p>\n<p>Actividad enmarcada en el D\u00eda Internacional <\/p>\n<p>La Asociaci\u00f3n Espa\u00f1ola de Familiares y Afectados por el S\u00edndrome de Kabuki, enmarcado en esta jornada, celebrar\u00e1 ma\u00f1ana un webinar gratuito en el que se hablar\u00e1 sobre la importancia del diagn\u00f3stico precoz y asesoramiento gen\u00e9tico y el trastorno del Espectro Autista en ni\u00f1os con S\u00edndrome de Kabuki, as\u00ed como la detecci\u00f3n y el diagn\u00f3stico. Adem\u00e1s, dos testimonios trasladar\u00e1n la realidad de lo que es convivir con esta patolog\u00eda.<\/p>\n<p>\u00daltima actualizaci\u00f3n 22\/10\/2020<\/p>\n<\/p>\n<p>Fuente: FEDER <a href=\"https:\/\/enfermedades-raras.org\/index.php\/actualidad\/noticias-eventos\/2-feder\/14418-nos-solidarizamos-con-los-pacientes-y-familiares-que-conviven-con-s%C3%ADndrome-de-kabuki-en-su-d%C3%ADa-mundial\" target=\"_blank\" rel=\"noopener noreferrer\">Nos solidarizamos con los pacientes y familiares que conviven con S\u00edndrome de Kabuki en su D\u00eda Mundial<\/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) se suma al D\u00eda Internacional del S\u00edndrome de Kabuki, que se celebrar\u00e1 ma\u00f1ana, para apoyar al colectivo de pacientes que conviven con esta enfermedad poco frecuente y a las entidades del movimiento asociativo. \u201cDesde FEDER nos [&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-6297","post","type-post","status-publish","format-standard","hentry","category-noticias","tag-enfermedades-raras"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.9 - 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