{"id":5528,"date":"2023-02-15T09:57:28","date_gmt":"2023-02-15T08:57:28","guid":{"rendered":"https:\/\/www.tauli.cat\/actualitat\/?p=5528"},"modified":"2023-02-15T15:22:23","modified_gmt":"2023-02-15T14:22:23","slug":"la-facana-de-lajuntament-silluminara-de-color-blau-amb-motiu-del-dia-internacional-de-la-sindrome-dangelman","status":"publish","type":"post","link":"https:\/\/www.tauli.cat\/actualitat\/noticia\/2023\/02\/la-facana-de-lajuntament-silluminara-de-color-blau-amb-motiu-del-dia-internacional-de-la-sindrome-dangelman\/","title":{"rendered":"La fa\u00e7ana de l\u2019Ajuntament s\u2019il\u00b7luminar\u00e0 de color blau amb motiu del Dia Internacional de la S\u00edndrome d\u2019Angelman","gt_translate_keys":[{"key":"rendered","format":"text"}]},"content":{"rendered":"<div data-section-type=\"fullwidth-background\" data-image-type=\"none\" data-full-height=\"no\" class=\"eut-section\"><div class=\"eut-row eut-bookmark\"><div class=\"wpb_column eut-column eut-column-1\"><div class=\"eut-element eut-text\"><p><span lang=\"CA\">La fa\u00e7ana de l\u2019edifici de l\u2019Ajuntament s\u2019il\u00b7luminar\u00e0 de color blau avui, 15 de febrer, amb motiu de la celebraci\u00f3 del Dia Internacional de la S\u00edndrome d\u2019Angelman. El consistori es suma aix\u00ed a la iniciativa per promoure la investigaci\u00f3 d\u2019aquesta malaltia a c\u00e0rrec de la Unitat de S\u00edndrome d\u2019Angelman que forma part de la xarxa d\u2019Unitats d\u2019Expertesa Cl\u00ednica de Malalties Minorit\u00e0ries de l\u2019Hospital Universitari Parc Taul\u00ed i de les entitats FAST- Espa\u00f1a (Foundation for Angelman Syndrome) i ASA Asociaci\u00f3n del S\u00edndrome de Angelman.<\/span><\/p>\n<p><span lang=\"CA\">El Parc Taul\u00ed \u00e9s un dels centres de refer\u00e8ncia pel diagn\u00f2stic i seguiment d\u2019aquests pacients d\u2019arreu de l\u2019estat espanyol. I s\u2019hi han implementat assajos cl\u00ednics, projectes de recerca i jornades tan professionals com adre\u00e7ades a fam\u00edlies.\u00a0<\/span><\/p>\n<p><span lang=\"CA\">FAST t\u00e9 com a objectiu la cura de la s\u00edndrome d\u2019Angelman a trav\u00e9s de l\u2019estimulaci\u00f3 de la recerca. ASA t\u00e9 com a objectiu facilitar la comunicaci\u00f3 entre las fam\u00edlies i oferir l\u2019assessorament i informaci\u00f3 sobre la malaltia per a que les persones afectades gaudeixin d\u2019una bona qualitat de vida aix\u00ed com estimular la recerca a tots els nivells.<\/span><\/p>\n<p><span lang=\"CA\">La s\u00edndrome d&#8217;Angelman, descoberta l&#8217;any 1964 pel Dr. Harry Angelman, \u00e9s una malaltia\u00a0 d\u2019etiologia neurogen\u00e8tica que es caracteritza per un endarreriment en el desenvolupament de la persona. La causa gen\u00e8tica de la S\u00edndrome d\u2019Angelman \u00e9s la manca d\u2019expressi\u00f3 d\u2019<i>UBE3A<\/i>\u00a0en el cromosoma 15 d\u2019origen matern i s\u2019origina per diferents mecanismes com delecions, mutacions, disomies uniparentals i defectes epigen\u00e8tics. Aquesta s\u00edndrome no es diagnostica en n\u00e9ixer sin\u00f3 que es comen\u00e7a a fer evident entre els 6 i 12 mesos. \u00a0<\/span><\/p>\n<p><span lang=\"CA\">M\u00e9s informaci\u00f3:<\/span><\/p>\n<p><span lang=\"CA\"><a href=\"https:\/\/www.tauli.cat\/es\/hospital\/malalties-minoritaries\/uec-mcc\/sindrome-d-angelman\">https:\/\/www.tauli.cat\/es\/hospital\/malalties-minoritaries\/uec-mcc\/sindrome-d-angelman<\/a><\/span><\/p>\n<p><span lang=\"CA\"><a href=\"https:\/\/www.cureangelman.es\/\">https:\/\/www.cureangelman.es\/<\/a><\/span><\/p>\n<p><span lang=\"CA\"><a href=\"https:\/\/angelman-asa.org\/\">https:\/\/angelman-asa.org\/<\/a><\/span><\/p>\n<\/div><\/div><\/div><div class=\"eut-bg-wrapper\"><\/div><\/div>\n","gt_translate_keys":[{"key":"rendered","format":"html"}]},"excerpt":{"rendered":"<p>El Parc Taul\u00ed \u00e9s un dels centres de refer\u00e8ncia pel diagn\u00f2stic i seguiment d\u2019aquests pacients d\u2019arreu de l\u2019estat espanyol.<\/p>\n","protected":false,"gt_translate_keys":[{"key":"rendered","format":"html"}]},"author":2,"featured_media":5529,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":[],"categories":[1],"tags":[827],"gt_translate_keys":[{"key":"link","format":"url"}],"_links":{"self":[{"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/posts\/5528"}],"collection":[{"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/comments?post=5528"}],"version-history":[{"count":3,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/posts\/5528\/revisions"}],"predecessor-version":[{"id":5534,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/posts\/5528\/revisions\/5534"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/media\/5529"}],"wp:attachment":[{"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/media?parent=5528"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/categories?post=5528"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.tauli.cat\/actualitat\/wp-json\/wp\/v2\/tags?post=5528"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}