{"id":12,"date":"2021-06-13T10:59:58","date_gmt":"2021-06-13T10:59:58","guid":{"rendered":"http:\/\/pmss.se\/?page_id=12"},"modified":"2026-02-08T15:44:57","modified_gmt":"2026-02-08T14:44:57","slug":"about","status":"publish","type":"page","link":"https:\/\/pmss.se\/","title":{"rendered":"Vi jobbar f\u00f6r gemenskap och \u00f6kad kunskap"},"content":{"rendered":"\n<figure class=\"wp-block-image size-large\"><img loading=\"lazy\" decoding=\"async\" width=\"1024\" height=\"521\" src=\"https:\/\/pmss.se\/wp-content\/uploads\/2026\/02\/pmss_01-2-1024x521.jpg\" alt=\"\" class=\"wp-image-165\" srcset=\"https:\/\/pmss.se\/wp-content\/uploads\/2026\/02\/pmss_01-2-1024x521.jpg 1024w, https:\/\/pmss.se\/wp-content\/uploads\/2026\/02\/pmss_01-2-300x153.jpg 300w, https:\/\/pmss.se\/wp-content\/uploads\/2026\/02\/pmss_01-2-768x391.jpg 768w, https:\/\/pmss.se\/wp-content\/uploads\/2026\/02\/pmss_01-2.jpg 1500w\" sizes=\"auto, (max-width: 1024px) 100vw, 1024px\" \/><\/figure>\n\n\n\n<div style=\"height:20px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p class=\"wp-block-paragraph\">F\u00f6reningen Phelan-McDermids Syndrom Sverige, PMSS, \u00e4r en ideell f\u00f6rening med fokus p\u00e5 syndromb\u00e4rare och anh\u00f6riga i Sverige. V\u00e5r vision \u00e4r att sprida kunskap om ett av de ovanligare syndromen och \u00e4ven skapa en plattform f\u00f6r \u00f6kad gemenskap och samh\u00f6righet. <\/p>\n\n\n\n<p class=\"wp-block-paragraph\">I nul\u00e4get jobbar vi med att n\u00e4tverka och planera den \u00e5rliga familjetr\u00e4ffen. Ut\u00f6ver en fysisk tr\u00e4ff anordnar vi ocks\u00e5 digitala medlemsm\u00f6ten och vi har en privat facebookgrupp d\u00e4r vi kan diskutera och komma med tips.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Phelan-McDermids syndrom \u00e4r ett medf\u00f6tt syndrom som \u00e4ven kallas f\u00f6r 22q13-deletionssyndrom eftersom de som har syndromet saknar den yttersta delen av kromosom 22. Detta ger kroniska funktionsneds\u00e4ttningar s\u00e5som exempelvis intellektuell funktionsvariation (fd utvecklingsst\u00f6rning), avsaknad av eller kraftigt f\u00f6rsenad tal- och spr\u00e5kutveckling, sen motorisk utveckling samt symptom inom autism.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Syndromet \u00e4r s\u00e4llsynt eftersom den teknik som beh\u00f6vs f\u00f6r att st\u00e4lla diagnosen \u00e4r f\u00f6rh\u00e5llandevis ny. Det \u00e4r d\u00e4rmed sannolikt att det finns personer som har syndromet men som inte \u00e4nnu f\u00e5tt diagnosen.&nbsp;<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Det \u00e4r i dagsl\u00e4get inte k\u00e4nt hur stort antalet \u00e4r i Sverige eftersom det tidigare inte funnits n\u00e5gon f\u00f6rening f\u00f6r syndromet.<\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a href=\"https:\/\/www.nationelltcenter.se\" target=\"_blank\" rel=\"noreferrer noopener\">Nationellt Center f\u00f6r Rett Syndrom och n\u00e4rliggande diagnoser<\/a> har sammanst\u00e4llt ett informationspaket tillsammans med oss! <a href=\"https:\/\/www.nationelltcenter.se\/kunskapsportalen\/phelan-mcdermid-syndrom\/\" target=\"_blank\" rel=\"noreferrer noopener\">L\u00e4s det h\u00e4r!<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\"><a rel=\"noreferrer noopener\" href=\"https:\/\/www.facebook.com\/watch\/?v=451598380135813&amp;ref=sharing\" data-type=\"URL\" data-id=\"https:\/\/www.facebook.com\/watch\/?v=451598380135813&amp;ref=sharing\" target=\"_blank\">Se filmen<\/a> fr\u00e5n v\u00e5r familjevistelse p\u00e5 Nationellt Center f\u00f6r Rett Syndrom!<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Kontakta oss p\u00e5 <a href=\"mailto:info@pmss.se\">info@pmss.se<\/a><\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Stort tack till Handelsbanken som hj\u00e4lpt oss en bit p\u00e5 v\u00e4gen.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>F\u00f6reningen Phelan-McDermids Syndrom Sverige, PMSS, \u00e4r en ideell f\u00f6rening med fokus p\u00e5 syndromb\u00e4rare och anh\u00f6riga i Sverige. V\u00e5r vision \u00e4r att sprida kunskap om ett av de ovanligare syndromen och \u00e4ven skapa en plattform f\u00f6r \u00f6kad gemenskap och samh\u00f6righet. I nul\u00e4get jobbar vi med att n\u00e4tverka och planera den \u00e5rliga familjetr\u00e4ffen. Ut\u00f6ver en fysisk tr\u00e4ff [&hellip;]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"site-sidebar-layout":"default","site-content-layout":"","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"","ast-breadcrumbs-content":"","ast-featured-img":"","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"set","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-12","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/pmss.se\/index.php?rest_route=\/wp\/v2\/pages\/12","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/pmss.se\/index.php?rest_route=\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/pmss.se\/index.php?rest_route=\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/pmss.se\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/pmss.se\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=12"}],"version-history":[{"count":23,"href":"https:\/\/pmss.se\/index.php?rest_route=\/wp\/v2\/pages\/12\/revisions"}],"predecessor-version":[{"id":166,"href":"https:\/\/pmss.se\/index.php?rest_route=\/wp\/v2\/pages\/12\/revisions\/166"}],"wp:attachment":[{"href":"https:\/\/pmss.se\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=12"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}