{"id":8466,"date":"2025-05-30T09:59:59","date_gmt":"2025-05-30T07:59:59","guid":{"rendered":"https:\/\/xfragil.cat\/?p=8466"},"modified":"2026-09-15T10:53:08","modified_gmt":"2026-09-15T08:53:08","slug":"acsxf-30-anys-dhistoria-compromis-i-esperanca-celebrem-plegats-el-cami-recorregut","status":"publish","type":"post","link":"https:\/\/xfragil.cat\/ca\/acsxf-30-anys-dhistoria-compromis-i-esperanca-celebrem-plegats-el-cami-recorregut\/","title":{"rendered":"ACSXF: 30 anys d\u2019hist\u00f2ria, comprom\u00eds i esperan\u00e7a.  Celebrem plegats el cam\u00ed recorregut"},"content":{"rendered":"<p>El passat <strong>9 de maig<\/strong> vam viure una jornada molt especial. La <strong>celebraci\u00f3 del 30\u00e8 aniversari de l\u2019Associaci\u00f3 Catalana S\u00edndrome X Fr\u00e0gil (ACSXF)<\/strong> va omplir l\u2019<strong>Antiga F\u00e0brica Estrella Damm<\/strong> d\u2019emocions, records i, sobretot, d\u2019agra\u00efment. Va ser una trobada per mirar enrere amb orgull i cap al futur amb il\u00b7lusi\u00f3, envoltats de moltes de les fam\u00edlies, professionals i persones que han fet possible aquest projecte al llarg de tres d\u00e8cades.<\/p>\n<p>Des dels inicis, l\u2019<strong>ACSXF<\/strong> ha estat molt m\u00e9s que una associaci\u00f3: ha estat un <strong>espai de suport mutu, de lluita compartida i de construcci\u00f3 d\u2019esperan\u00e7a<\/strong>. Aquest acte va ser una manera de <strong>recone\u0300ixer tot l&#8217;esfor\u00e7 col\u00b7lectiu<\/strong> que s\u2019ha fet per donar visibilitat a la S\u00edndrome X Fr\u00e0gil, per acompanyar les fam\u00edlies, i per avan\u00e7ar en l\u2019atenci\u00f3 i els drets de les persones que en formen part.<\/p>\n<p>Durant la celebraci\u00f3, vam tenir <strong>parlaments carregats d\u2019emoci\u00f3<\/strong>,\u00a0 i es va fer el passi del <strong>v\u00eddeo commemoratiu<\/strong> que ens va fer reviure moments clau d\u2019aquests 30 anys:<\/p>\n<p>&nbsp;<\/p>\n<p><iframe title=\"30 anys de comprom\u00eds i transformaci\u00f3 \/ 30 a\u00f1os de compromiso y transformaci\u00f3n\" width=\"800\" height=\"450\" src=\"https:\/\/www.youtube.com\/embed\/Djr1LEZXABk?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n<p>Tamb\u00e9 va ser una bona oportunitat per retrobar-nos, compartir i gaudir. Cada rostre present era un reflex d\u2019aquesta gran fam\u00edlia que hem anat construint plegats.<\/p>\n<p>Volem destacar especialment <strong>la col\u00b7laboraci\u00f3 i el paper fonamental dels professionals<\/strong> que ens han acompanyat en aquest cam\u00ed. Sense el seu comprom\u00eds, la seva mirada humana i el seu saber, no haur\u00edem arribat fins aqu\u00ed. Aquesta relaci\u00f3 entre fam\u00edlies i professionals ha estat, i continua essent, un pilar clau per fer cr\u00e9ixer l\u2019Associaci\u00f3 i donar resposta a les necessitats de tothom.<\/p>\n<p><strong>Gr\u00e0cies a totes les persones que hi heu estat, d\u2019una manera o altra, al llarg d\u2019aquests 30 anys.<\/strong> Aquesta celebraci\u00f3 no nom\u00e9s mira enrere: ens impulsa cap endavant. Amb m\u00e9s for\u00e7a, m\u00e9s complicitats i m\u00e9s ganes de continuar caminant.<\/p>\n<p>Finalment, volem expressar el nostre sincer agra\u00efment a <strong>Estrella Damm, Connecta Therapeutics, Banc Sabadell, Aig\u00fces de Barcelona i Diputaci\u00f3 de Barcelona<\/strong> pel seu comprom\u00eds i suport en la realitzaci\u00f3 d\u2019aquest esdeveniment, que ha estat de gran rellev\u00e0ncia per a la nostra entitat i per a les fam\u00edlies que acompanyem.<\/p>\n<p><strong>Per molts anys m\u00e9s!<\/strong><\/p>\n<p>I per recordar-ho, hem preparat un <strong>v\u00eddeo resum de l\u2019acte commemoratiu<\/strong> perqu\u00e8 pugueu reviure els millors moments o descobrir-los si no vau poder venir. \u00c9s un recull d\u2019imatges, somriures i emocions que reflecteixen tot el que hem compartit durant la celebraci\u00f3:<\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n<p><iframe title=\"Acte de celebraci\u00f3 dels 30 anys de l&amp;apos;ACSXF. 9\/5\/25 a l&amp;apos;Antiga F\u00e0brica Estrella Damm\" width=\"563\" height=\"1000\" src=\"https:\/\/www.youtube.com\/embed\/bm9akas_Erw?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen><\/iframe><\/p>\n","protected":false},"excerpt":{"rendered":"<p>El passat 9 de maig vam viure una jornada molt especial. La celebraci\u00f3 del 30\u00e8 aniversari de l\u2019Associaci\u00f3 Catalana S\u00edndrome X Fr\u00e0gil (ACSXF) va omplir l\u2019Antiga F\u00e0brica Estrella Damm d\u2019emocions, records i, sobretot, d\u2019agra\u00efment. Va ser una trobada per mirar enrere amb orgull i cap al futur amb il\u00b7lusi\u00f3, envoltats de moltes de les fam\u00edlies, [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":8467,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[11],"tags":[64,45,49,65],"class_list":["post-8466","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-esdeveniments","tag-acsxf","tag-inclusio","tag-sxf","tag-xfragil"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>ACSXF: 30 anys d\u2019hist\u00f2ria, comprom\u00eds i esperan\u00e7a. Celebrem plegats el cam\u00ed recorregut - Associaci\u00f3 Catalana S\u00edndrome X Fr\u00e0gil \u2013 Som l&#039;Associaci\u00f3 que dona suport i acompanyament a les fam\u00edlies amb fills i filles amb S\u00edndrome X Fr\u00e0gil a Catalunya<\/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:\/\/xfragil.cat\/ca\/acsxf-30-anys-dhistoria-compromis-i-esperanca-celebrem-plegats-el-cami-recorregut\/\" \/>\n<meta property=\"og:locale\" content=\"ca_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"ACSXF: 30 anys d\u2019hist\u00f2ria, comprom\u00eds i esperan\u00e7a. Celebrem plegats el cam\u00ed recorregut - Associaci\u00f3 Catalana S\u00edndrome X Fr\u00e0gil \u2013 Som l&#039;Associaci\u00f3 que dona suport i acompanyament a les fam\u00edlies amb fills i filles amb S\u00edndrome X Fr\u00e0gil a Catalunya\" \/>\n<meta property=\"og:description\" content=\"El passat 9 de maig vam viure una jornada molt especial. La celebraci\u00f3 del 30\u00e8 aniversari de l\u2019Associaci\u00f3 Catalana S\u00edndrome X Fr\u00e0gil (ACSXF) va omplir l\u2019Antiga F\u00e0brica Estrella Damm d\u2019emocions, records i, sobretot, d\u2019agra\u00efment. 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