{"id":1407,"date":"2023-11-02T19:37:58","date_gmt":"2023-11-02T18:37:58","guid":{"rendered":"https:\/\/xfragil.cat\/?page_id=1407"},"modified":"2023-12-22T06:49:46","modified_gmt":"2023-12-22T05:49:46","slug":"missio-visio-i-valors","status":"publish","type":"page","link":"https:\/\/xfragil.cat\/ca\/missio-visio-i-valors\/","title":{"rendered":"Missi\u00f3, visi\u00f3 i valors"},"content":{"rendered":"\t\t<div data-elementor-type=\"wp-page\" data-elementor-id=\"1407\" class=\"elementor elementor-1407\" data-elementor-settings=\"{&quot;ha_cmc_init_switcher&quot;:&quot;no&quot;}\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4946f508 e-flex e-con-boxed e-con e-parent\" data-id=\"4946f508\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;,&quot;_ha_eqh_enable&quot;:false}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-702645f3 e-con-full e-flex e-con e-child\" data-id=\"702645f3\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;_ha_eqh_enable&quot;:false}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-16a243d9 elementor-widget elementor-widget-heading\" data-id=\"16a243d9\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Missi\u00f3, visi\u00f3 i valors<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-787a41a0 e-con-full e-flex e-con e-child\" data-id=\"787a41a0\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;_ha_eqh_enable&quot;:false}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-296ee889 elementor-align-right elementor-tablet-align-left elementor-mobile-align-left elementor-widget elementor-widget-breadcrumbs\" data-id=\"296ee889\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"breadcrumbs.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<p id=\"breadcrumbs\"><span><span><a href=\"https:\/\/xfragil.cat\/ca\/\">Portada<\/a><\/span><\/span><\/p>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-ce668ed e-flex e-con-boxed e-con e-parent\" data-id=\"ce668ed\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;_ha_eqh_enable&quot;:false}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-ecedc35 elementor-widget elementor-widget-image\" data-id=\"ecedc35\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"2000\" height=\"1810\" src=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2023\/12\/missio-visio-valors.jpg\" class=\"attachment-full size-full wp-image-2124\" alt=\"\" srcset=\"https:\/\/xfragil.cat\/wp-content\/uploads\/2023\/12\/missio-visio-valors.jpg 2000w, https:\/\/xfragil.cat\/wp-content\/uploads\/2023\/12\/missio-visio-valors-300x272.jpg 300w, https:\/\/xfragil.cat\/wp-content\/uploads\/2023\/12\/missio-visio-valors-1024x927.jpg 1024w, https:\/\/xfragil.cat\/wp-content\/uploads\/2023\/12\/missio-visio-valors-768x695.jpg 768w, https:\/\/xfragil.cat\/wp-content\/uploads\/2023\/12\/missio-visio-valors-1536x1390.jpg 1536w\" sizes=\"(max-width: 2000px) 100vw, 2000px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-4caa152 e-flex e-con-boxed e-con e-parent\" data-id=\"4caa152\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;_ha_eqh_enable&quot;:false}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-2748892 elementor-widget elementor-widget-heading\" data-id=\"2748892\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Missi\u00f3:<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6ab7bb6 elementor-widget elementor-widget-text-editor\" data-id=\"6ab7bb6\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Proporcionar suport a les fam\u00edlies amb persones amb la S\u00edndrome X Fr\u00e0gil, treballant per millorar la qualitat de vida de les persones, dotant-les d\u2019autonomia i recursos socials per a que puguin desenvolupar el seu projecte de vida.<\/p><p>Busquem tamb\u00e9 fomentar la consci\u00e8ncia p\u00fablica i la comprensi\u00f3 de la s\u00edndrome X fr\u00e0gil en la ciutadania.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-1677dfa e-flex e-con-boxed e-con e-parent\" data-id=\"1677dfa\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;_ha_eqh_enable&quot;:false}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-add220f elementor-widget elementor-widget-heading\" data-id=\"add220f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Visi\u00f3:<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-86ba8f4 elementor-widget elementor-widget-text-editor\" data-id=\"86ba8f4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Dotar a les persones amb la S\u00edndrome X Fr\u00e0gil les eines i els coneixements necessaris per ser aut\u00f2nomes. Acompanyem les persones en el cam\u00ed cap a la socialitzaci\u00f3, posant \u00e8mfasi en la import\u00e0ncia que tothom tingui acc\u00e9s a moments d&#8217;oci i esbarjo. Busquem no nom\u00e9s millorar la qualitat de vida immediata, sin\u00f3 tamb\u00e9 capacitar-les per assolir la independ\u00e8ncia i la participaci\u00f3 plena en la comunitat, garantint alhora que gaudeixin de les oportunitats per connectar-se i participar en activitats recreatives i socials.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-b5ef987 e-flex e-con-boxed e-con e-parent\" data-id=\"b5ef987\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;_ha_eqh_enable&quot;:false}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-c887769 elementor-widget elementor-widget-heading\" data-id=\"c887769\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Valors:<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1860517 elementor-widget elementor-widget-text-editor\" data-id=\"1860517\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<ul><li>Empatia: Abordem les necessitats de les fam\u00edlies amb comprensi\u00f3 i empatia, proporcionant suport emocional i pr\u00e0ctic.<\/li><li>Inclusi\u00f3: Creiem en la inclusi\u00f3 de totes les persones.<\/li><li>Col\u00b7laboraci\u00f3: Teixim complicitats amb altres organitzacions, professionals de la salut i la comunitat per millorar les oportunitats i els recursos disponibles.<\/li><li>Educaci\u00f3: Promovem l&#8217;educaci\u00f3 continuada sobre la s\u00edndrome X fr\u00e0gil per aconseguir una comprensi\u00f3 m\u00e9s \u00e0mplia i fer passes cap a la inclusi\u00f3 efectiva i real.<\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-b87f846 e-flex e-con-boxed e-con e-parent\" data-id=\"b87f846\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;_ha_eqh_enable&quot;:false}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-87b641b elementor-widget elementor-widget-heading\" data-id=\"87b641b\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">L\u2019entitat<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-f187cc8 elementor-widget elementor-widget-text-editor\" data-id=\"f187cc8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>L\u2019Associaci\u00f3 Catalana S\u00edndrome X Fr\u00e0gil neix l\u2019any 1995 per donar resposta a les necessitats de les fam\u00edlies que tenen fills o filles afectats amb aquesta s\u00edndrome. Moltes d\u2019aquestes fam\u00edlies han passat per moments dif\u00edcils i de gran incertesa al rebre el diagn\u00f2stic, i l\u2019Associaci\u00f3 esdev\u00e9 un punt de trobada i un espai de recolzament, d\u2019interacci\u00f3 i d\u2019intercanvi d\u2019experi\u00e8ncies i sentiments.<\/p><p>\u00c9s per aix\u00f2, que un dels objectius b\u00e0sics de l\u2019Associaci\u00f3 \u00e9s oferir acollida i ajuda a les fam\u00edlies que han estat diagnosticades. a la vegada tamb\u00e9 fer divulgaci\u00f3, sensibilitzaci\u00f3 i formaci\u00f3 a la ciutadania per tal de donar a con\u00e8ixer la S\u00edndrome arreu.<\/p><p>Formem part activa de diverses federacions per tal d\u2019establir complicitats i sinergies que ens permetin avan\u00e7ar cap a una societat d\u2019escala humana:<\/p><ul><li>Federaci\u00f3 Catalana de Malalties Minorit\u00e0ries (FECAMM)<\/li><li>Federaci\u00f3n Espa\u00f1ola de Asociaciones del SXF<\/li><li>Federaci\u00f3n Espa\u00f1ola de las Enfermedades Raras (FEDER)<\/li><li>Codi \u00e8tic de les associacions de Barcelona<\/li><li>The National Fragile X Foundation (NFXF)<\/li><li>Plataforma de Malalties Minorit\u00e0ries<\/li><\/ul><p>\u00a0<\/p><p>Cal destacar, que des del 2005, l\u2019Associaci\u00f3 est\u00e0 declarada com a Entitat d\u2019Utilitat P\u00fablica, inscrita al registre amb el n\u00famero 16.155.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-ac9761d e-flex e-con-boxed e-con e-parent\" data-id=\"ac9761d\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;_ha_eqh_enable&quot;:false}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-905f290 elementor-widget elementor-widget-heading\" data-id=\"905f290\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Una mica d\u2019hist\u00f2ria<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-10e116a elementor-widget elementor-widget-text-editor\" data-id=\"10e116a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>Per a donar forma al projecte de l\u2019Associaci\u00f3, es va sol\u00b7licitar l\u2019ajuda de l\u2019artista Joana Catot perqu\u00e8 treball\u00e9s en una proposta per al desenvolupament del que seria l\u2019actual icona del X Fr\u00e0gil, la papallona. La Joana veia la \u201cX\u201d com a imatge, per\u00f2 tamb\u00e9 un \u00e9sser viu, i \u00e9s aix\u00ed com sorgeixen diverses papallones en les seves propostes.<\/p><p>L\u2019elecci\u00f3 va resultar molt dif\u00edcil. Es va demanar a un infant amb la S\u00edndrome X Fr\u00e0gil que seleccion\u00e9s una papallona amb el seu corresponent color. Va ser en aquell moment quan va apar\u00e8ixer per primera vegada la papallona que representa a les nostres Associacions i a la S\u00edndrome X Fr\u00e0gil.<\/p><p>En aquest proc\u00e9s van col\u2022laborar-hi Elena Tremoleda, Carmen Brun, Montse Mil\u00e0, Albert Lahuerta, Raquel F\u00fcrgang, In\u00e9s S\u00e1nchez, Jos\u00e9 Lu\u00eds Garc\u00eda, Teresa Le\u00f3n i Yoyes Lamarca.<\/p><p>Es pot destacar que la selecci\u00f3 va estar realitzada amb molta receptivitat per part de l\u2019artista ja que existeixen moltes connotacions entre la S\u00edndrome i la papallona: la papallona \u00e9s fr\u00e0gil, aleteja, \u00e9s hiperactiva, t\u00e9 moltes ganes de viure, t\u00e9 semblan\u00e7a amb la X, etc.<\/p><p>Un altre dia destacat en refer\u00e8ncia a la papallona, va ser quan l\u2019octubre del 2001 el grup La Oreja de Van Gogh ens va dedicar la seva can\u00e7\u00f3 \u201cMariposa\u201d.<\/p><p>M\u00e9s endavant el nostre logotip va ser adoptat per altres associacions germanes d\u2019Espanya i de l\u2019Am\u00e8rica Llatina.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a2257e4 elementor-widget elementor-widget-video\" data-id=\"a2257e4\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;youtube_url&quot;:&quot;https:\\\/\\\/www.youtube.com\\\/watch?v=jlsrWOPogQ4&quot;,&quot;video_type&quot;:&quot;youtube&quot;,&quot;controls&quot;:&quot;yes&quot;}\" data-widget_type=\"video.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t<div class=\"elementor-wrapper elementor-open-inline\">\n\t\t\t<div class=\"elementor-video\"><\/div>\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-7f6e3e1 e-flex e-con-boxed e-con e-parent\" data-id=\"7f6e3e1\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;_ha_eqh_enable&quot;:false}\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-0c71130 elementor-widget elementor-widget-heading\" data-id=\"0c71130\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Presid\u00e8ncia<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-cfd7cae elementor-widget elementor-widget-text-editor\" data-id=\"cfd7cae\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p>L\u2019Associaci\u00f3 ha tingut diverses presid\u00e8ncies amb la corresponent Junta Directiva. A continuaci\u00f3 s\u2019anomenen les diverses persones que han dedicat part del seu temps en tirar endavant l\u2019associaci\u00f3 des de la posici\u00f3 de la Presid\u00e8ncia de l\u2019entitat:<\/p><ul><li>Carles-Miquel Faur\u00f3 i S\u00e1nchez (1995-1996)<\/li><li>Albert Lahuerta Montoliu (1996-2002)<\/li><li>Manel Rod\u00e9s (2002-2004)<\/li><li>Merc\u00e8 Bellavista (2004-2017)<\/li><li>Mar\u00eda Elena Gonz\u00e1lez (2017- 2018)<\/li><li>L\u00eddia M\u00e9ndez (Des de 2018)<\/li><\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t","protected":false},"excerpt":{"rendered":"<p>Missi\u00f3: Proporcionar suport a les fam\u00edlies amb persones amb la S\u00edndrome X Fr\u00e0gil, treballant per millorar la qualitat de vida de les persones, dotant-les d\u2019autonomia i recursos socials per a que puguin desenvolupar el seu projecte de vida. Busquem tamb\u00e9 fomentar la consci\u00e8ncia p\u00fablica i la comprensi\u00f3 de la s\u00edndrome X fr\u00e0gil en la ciutadania. [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"elementor_header_footer","meta":{"footnotes":""},"class_list":["post-1407","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Missi\u00f3, Visi\u00f3 i Valors. Comprom\u00eds amb X Fr\u00e0gil.<\/title>\n<meta name=\"description\" content=\"Compromesos amb suportar fam\u00edlies i millorar la vida amb X Fr\u00e0gil. 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