{"id":5204,"date":"2023-06-06T07:41:00","date_gmt":"2023-06-06T05:41:00","guid":{"rendered":"https:\/\/www.amyloidosisalliance.org\/whf-forumet-i-schweiz\/"},"modified":"2026-11-03T10:46:24","modified_gmt":"2026-11-03T09:46:24","slug":"whf-forumet-i-schweiz","status":"publish","type":"post","link":"https:\/\/www.amyloidosisalliance.org\/sv\/whf-forumet-i-schweiz\/","title":{"rendered":"WHF-forumet i Schweiz"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">World Heart Federation (WHF) h\u00f6ll den 17-18 maj 2023 ett s\u00e4rskilt forum i Gen\u00e8ve i Schweiz med titeln \u201dSHINING A LIGHT ON RARE CARDIOVASCULAR DISEASES\u201d (Str\u00e5lkastarljus p\u00e5 s\u00e4llsynta hj\u00e4rt- och k\u00e4rlsjukdomar), inf\u00f6r World Heart Summit 2023 den 19-21 maj. Patientf\u00f6retr\u00e4dare med egen erfarenhet av fyra s\u00e4llsynta hj\u00e4rt- och k\u00e4rlsjukdomar bj\u00f6ds in f\u00f6r att f\u00f6ra fram patienternas perspektiv och l\u00e5ta sina r\u00f6ster p\u00e5verka WHF:s strategier f\u00f6r diagnos och behandling av dessa s\u00e4llsynta sjukdomar:<\/p>\n\n<h2 class=\"wp-block-heading\">Panelen bestod av patientf\u00f6retr\u00e4dare f\u00f6r f\u00f6ljande fyra s\u00e4llsynta hj\u00e4rt- och k\u00e4rlsjukdomar:\u00a0<\/h2>\n\n<div class=\"wp-block-group is-vertical is-layout-flex wp-container-core-group-is-layout-1bbac977 wp-block-group-is-layout-flex\">\n<ul class=\"wp-block-list\">\n<li>pulmonell arteriell hypertension (PAH),\u00a0<\/li>\n\n\n\n<li>homozygot familj\u00e4r hyperkolesterolemi (HoFH)\u00a0<\/li>\n\n\n\n<li>transtyretinamyloid kardiomyopati (ATTR-CM)\u00a0<\/li>\n\n\n\n<li>\u00e4rftlig hypertrofisk kardiomyopati\u00a0<\/li>\n<\/ul>\n<\/div>\n\n<p class=\"wp-block-paragraph\">Forumet inleddes med ett anf\u00f6rande av dr Daniel Pi\u00f1eiro, ordf\u00f6rande f\u00f6r WHF, som p\u00e5minde om att: \u00a0<\/p>\n\n<ul class=\"wp-block-list\">\n<li>H\u00e4lsa \u00e4r en m\u00e4nsklig r\u00e4ttighet, och alla patienter f\u00f6rtj\u00e4nar ett l\u00e4ngre liv och en b\u00e4ttre livskvalitet.<\/li>\n\n\n\n<li>Patienternas egna r\u00f6ster \u00e4r b\u00e4ttre \u00e4n att l\u00e4kare talar f\u00f6r deras r\u00e4kning.\u00a0<\/li>\n<\/ul>\n\n<p class=\"wp-block-paragraph\">Specialistl\u00e4kare f\u00f6r var och en av de fyra s\u00e4llsynta sjukdomarna gjorde presentationer f\u00f6r gruppen. Dr Nikki Bart, University of New South Wales i Australien, deltog i forumet p\u00e5 distans f\u00f6r att ta upp de st\u00f6rsta utmaningarna f\u00f6r patienter med ATTR-CM. Dr Bart lyfte fram flera viktiga omr\u00e5den som p\u00e5verkar diagnos och behandling av ATTR-CM, bland annat f\u00f6rdr\u00f6jd diagnos och f\u00f6rdr\u00f6jd tillg\u00e5ng till behandling.\u00a0<\/p>\n\n<p class=\"wp-block-paragraph\">Keith Dares fr\u00e5n Kanada, medlem i Amyloidosis Alliance, \u00e4r patient och lever med ATTR-CM. Keith var glad att f\u00e5 delta i forumet och ber\u00e4tta om sin v\u00e4g till diagnos och hur ATTR-CM p\u00e5verkar hans vardag. Grupparbetena ledde till m\u00e5nga diskussioner, d\u00e4r man identifierade omr\u00e5den som beh\u00f6ver f\u00f6rb\u00e4ttras:\u00a0<\/p>\n\n<h2 class=\"wp-block-heading\">Vad beh\u00f6vs f\u00f6r att korta tiden till en korrekt diagnos?\u00a0<\/h2>\n\n<p class=\"wp-block-paragraph\">Hur kan allm\u00e4nl\u00e4kare f\u00e5 b\u00e4ttre verktyg f\u00f6r att undvika missade eller felaktiga diagnoser: kan vi uppmuntra till att amyloidos utesluts tidigare, snarare \u00e4n senare, i diagnosrutinerna? Kan vi ta fram ett verktyg som flaggar f\u00f6r varningssignaler, s\u00e5 att diagnosen kan st\u00e4llas tidigare?\u00a0<\/p>\n\n<div class=\"wp-block-group is-vertical is-layout-flex wp-container-core-group-is-layout-1bbac977 wp-block-group-is-layout-flex\">\n<p class=\"wp-block-paragraph\">Hur kan man komma till r\u00e4tta med oj\u00e4mlikheten i diagnostiken f\u00f6r kvinnliga patienter?<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Vilka modeller finns f\u00f6r \u201dkompetenscentrum\u201d? Hur kan vi uppn\u00e5 b\u00e4ttre tillg\u00e5ng till b\u00e4ttre v\u00e5rd?\u00a0<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Hur kan vi minska hindren f\u00f6r att \u00f6ka tillg\u00e5ngen till behandlingar?\u00a0<\/p>\n<\/div>\n\n<p class=\"wp-block-paragraph\">N\u00e4r slutrapporterna presenterades den andra dagen var det intressant att se vilka gemensamma utmaningar de fyra patientgrupperna st\u00e5r inf\u00f6r. Lika intressant var den potential som just nu unders\u00f6ks hos artificiell intelligens och maskininl\u00e4rning f\u00f6r att korta tiden till diagnos. <\/p>\n\n<p class=\"wp-block-paragraph\">World Heart Federation har som m\u00e5l att anv\u00e4nda den information som patienterna delat f\u00f6r att ta fram en arbetsplan som tar itu med sv\u00e5righeterna kring diagnos, behandling och v\u00e5rd f\u00f6r dem som lever med s\u00e4llsynta hj\u00e4rt- och k\u00e4rlsjukdomar.<\/p>\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" src=\"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2023\/06\/10.png\" alt=\"\" class=\"wp-image-6805\"\/><\/figure>\n\n<div style=\"height:40px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n<figure class=\"wp-block-image size-full\"><img decoding=\"async\" src=\"https:\/\/www.amyloidosisalliance.org\/wp-content\/uploads\/2023\/06\/11.png\" alt=\"\" class=\"wp-image-6806\"\/><\/figure>\n","protected":false},"excerpt":{"rendered":"<p>Vid ett forum som World Heart Federation h\u00f6ll i Gen\u00e8ve i maj 2023 talade patientf\u00f6retr\u00e4dare, bland annat f\u00f6r ATTR-kardiomyopati, om s\u00e4llsynta hj\u00e4rtsjukdomar.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[93],"tags":[],"class_list":["post-5204","post","type-post","status-publish","format-standard","hentry","category-uncategorized-sv"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>WHF-forumet i Schweiz<\/title>\n<meta name=\"description\" content=\"Vid ett forum som World Heart Federation h\u00f6ll i Gen\u00e8ve i maj 2023 talade patientf\u00f6retr\u00e4dare, bland annat f\u00f6r ATTR-kardiomyopati, om s\u00e4llsynta 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