{"id":699,"date":"2022-07-04T09:54:30","date_gmt":"2022-07-04T07:54:30","guid":{"rendered":"https:\/\/frax.no\/site\/?p=699"},"modified":"2022-07-04T09:54:33","modified_gmt":"2022-07-04T07:54:33","slug":"frambu-konferansen-2022","status":"publish","type":"post","link":"https:\/\/frax.no\/site\/?p=699","title":{"rendered":"Frambu konferansen 2022"},"content":{"rendered":"\n<p>I str\u00e5lende solskinn deltok vi p\u00e5 Frambu konferansen 2022 Sjeldent lykkelig i g\u00e5r. Det ble satt stor pris p\u00e5 av overlege Bratsvik at vi deltok som forening, med arbeidsskjorta var det ikke vanskelig \u00e5 se hvor vi kom fra. Vi fremmet selvsagt behovet for nytt kurs i Fragilt X Syndrom, s\u00e6rlig p\u00e5 grunn av dere nye familier som har kommet til oss.<\/p>\n\n\n\n<p>Det ble en lang dag med mange gode foredrag, om prosjektet Alvorlig sykt barn, livskvalitet, hva er et godt liv, masse humor og selvironi, personlige og r\u00f8rende historier om \u00e5 leve med og sammen med en sjelden diagnose. Oppturer og nedturer som livet stort sett best\u00e5r av.<\/p>\n\n\n\n<p>Dagen ble avsluttet med grilling og en flott minikonsert fra Torshovkorpset som b\u00e5de sang og spilte kjente og ukjente melodier.<\/p>\n\n\n\n<p>En utrolig fin dag!<\/p>\n\n\n\n<p>Til slutt var det en time med brukerforum. Ordf\u00f8reren fra Follo hadde en meget klok setning: v\u00e6r rause med hverandre og tenk godt igjennom hvordan vi snakker med og om hverandre. Tenker at dette er en god p\u00e5minnelse til oss alle. V\u00e6re rause med hverandre og gi masse god omsorg. Livet og verden er t\u00f8ff nok som det er.<\/p>\n\n\n\n<p>Vi undres etter g\u00e5rsdagen:<\/p>\n\n\n\n<p>Hva er god livskvalitet for deg? Hva er et godt liv for deg?<\/p>\n\n\n\n<div class=\"wp-block-jetpack-tiled-gallery aligncenter is-style-rectangular\"><div class=\"tiled-gallery__gallery\"><div class=\"tiled-gallery__row\"><div class=\"tiled-gallery__col\" style=\"flex-basis:63.97862%\"><figure class=\"tiled-gallery__item\"><img decoding=\"async\" srcset=\"https:\/\/i2.wp.com\/frax.no\/site\/wp-content\/uploads\/288465686_10158327049382102_3584597869113079932_n-1024x768.jpg?strip=info&#038;w=600&#038;ssl=1 600w,https:\/\/i2.wp.com\/frax.no\/site\/wp-content\/uploads\/288465686_10158327049382102_3584597869113079932_n-1024x768.jpg?strip=info&#038;w=900&#038;ssl=1 900w,https:\/\/i2.wp.com\/frax.no\/site\/wp-content\/uploads\/288465686_10158327049382102_3584597869113079932_n-1024x768.jpg?strip=info&#038;w=1200&#038;ssl=1 1200w,https:\/\/i2.wp.com\/frax.no\/site\/wp-content\/uploads\/288465686_10158327049382102_3584597869113079932_n-1024x768.jpg?strip=info&#038;w=1500&#038;ssl=1 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Det ble satt stor pris p\u00e5 av overlege Bratsvik at vi deltok som forening, med arbeidsskjorta var det ikke vanskelig \u00e5 se hvor vi kom fra. Vi fremmet selvsagt behovet for nytt kurs i Fragilt X Syndrom, s\u00e6rlig p\u00e5 grunn av dere [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":706,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[37],"tags":[],"class_list":{"0":"post-699","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-informasjon","8":"czr-hentry"},"aioseo_notices":[],"jetpack_featured_media_url":"https:\/\/frax.no\/site\/wp-content\/uploads\/288754492_10158327049342102_6959017405184770145_n.jpg","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/frax.no\/site\/index.php?rest_route=\/wp\/v2\/posts\/699","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/frax.no\/site\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/frax.no\/site\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/frax.no\/site\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/frax.no\/site\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=699"}],"version-history":[{"count":2,"href":"https:\/\/frax.no\/site\/index.php?rest_route=\/wp\/v2\/posts\/699\/revisions"}],"predecessor-version":[{"id":709,"href":"https:\/\/frax.no\/site\/index.php?rest_route=\/wp\/v2\/posts\/699\/revisions\/709"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/frax.no\/site\/index.php?rest_route=\/wp\/v2\/media\/706"}],"wp:attachment":[{"href":"https:\/\/frax.no\/site\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=699"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/frax.no\/site\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=699"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/frax.no\/site\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=699"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}