{"id":15888,"date":"2019-11-14T08:09:40","date_gmt":"2019-11-14T07:09:40","guid":{"rendered":"http:\/\/agora.xtec.cat\/si-stllorenc\/?p=15888"},"modified":"2019-11-14T08:09:40","modified_gmt":"2019-11-14T07:09:40","slug":"xerrada-de-la-marato-4","status":"publish","type":"post","link":"https:\/\/agora.xtec.cat\/si-stllorenc\/portada\/xerrada-de-la-marato-4\/","title":{"rendered":"Xerrada de La Marat\u00f3"},"content":{"rendered":"<p style=\"text-align: justify;\">Les malalties minorit\u00e0ries s\u00f3n patologies molt poc freq\u00fcents que afecten un m\u00e0xim de 5 persones per cada 10.000. Actualment, n\u2019hi ha descrites unes 7.000, al voltant del 80% s\u00f3n d\u2019origen gen\u00e8tic i acostumen a ser greus, cr\u00f2niques, progressives i discapacitants. A Catalunya, es calcula que hi ha 400.000 persones amb una malaltia rara.<\/p>\n<p style=\"text-align: justify;\">Com que s\u00f3n tan desconegudes, poc freq\u00fcents i nombroses, sovint el diagn\u00f2stic correcte triga anys a arribar. Un cop diagnosticats, el 40% dels pacients no tenen tractament.<\/p>\n<p style=\"text-align: justify;\">Segons els experts, dos dels objectius m\u00e9s urgents de la recerca en malalties minorit\u00e0ries s\u00f3n les proves per detectar-les en el moment de n\u00e9ixer i els tractaments eficients i segurs. Els recursos recaptats per La Marat\u00f3 2019 contribuiran a impulsar aquests i altres objectius de la recerca.<\/p>\n<p style=\"text-align: justify;\">El proper divendres, en l&#8217;espai de tutoria, s&#8217;organitzar\u00e0 una sessi\u00f3 informativa per sensibilitzar sobre les malalties que s\u00f3n objecte del programa on la solidaritat, la investigaci\u00f3 i la mobilitzaci\u00f3 ciutadana s\u00f3n els pilars d&#8217;una iniciativa de gran tradici\u00f3 i significat a Catalunya.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"aligncenter size-large\" src=\"https:\/\/statics.ccma.cat\/multimedia\/png\/5\/1\/1568897143015.png\" width=\"756\" height=\"427\" \/><\/p>\n","protected":false},"excerpt":{"rendered":"<p>Les malalties minorit\u00e0ries s\u00f3n patologies molt poc freq\u00fcents que afecten un m\u00e0xim de 5 persones per cada 10.000. Actualment, n\u2019hi ha descrites unes 7.000, al voltant del 80% s\u00f3n d\u2019origen gen\u00e8tic i acostumen a ser greus, cr\u00f2niques, progressives i discapacitants. A Catalunya, es calcula que&hellip;  <a href=\"https:\/\/agora.xtec.cat\/si-stllorenc\/portada\/xerrada-de-la-marato-4\/\" title=\"Read Xerrada de La Marat\u00f3\">Llegeix m\u00e9s\u00bb<\/a><\/p>\n","protected":false},"author":1,"featured_media":943,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"footnotes":""},"categories":[29],"tags":[163,162,44],"class_list":["post-15888","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-portada","tag-marato-tv3","tag-tutoria","tag-xerrades"],"post_mailing_queue_ids":[],"_links":{"self":[{"href":"https:\/\/agora.xtec.cat\/si-stllorenc\/wp-json\/wp\/v2\/posts\/15888","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/agora.xtec.cat\/si-stllorenc\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/agora.xtec.cat\/si-stllorenc\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/agora.xtec.cat\/si-stllorenc\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/agora.xtec.cat\/si-stllorenc\/wp-json\/wp\/v2\/comments?post=15888"}],"version-history":[{"count":1,"href":"https:\/\/agora.xtec.cat\/si-stllorenc\/wp-json\/wp\/v2\/posts\/15888\/revisions"}],"predecessor-version":[{"id":15889,"href":"https:\/\/agora.xtec.cat\/si-stllorenc\/wp-json\/wp\/v2\/posts\/15888\/revisions\/15889"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/agora.xtec.cat\/si-stllorenc\/wp-json\/wp\/v2\/media\/943"}],"wp:attachment":[{"href":"https:\/\/agora.xtec.cat\/si-stllorenc\/wp-json\/wp\/v2\/media?parent=15888"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/agora.xtec.cat\/si-stllorenc\/wp-json\/wp\/v2\/categories?post=15888"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/agora.xtec.cat\/si-stllorenc\/wp-json\/wp\/v2\/tags?post=15888"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}