{"id":1728,"date":"2023-06-06T07:41:00","date_gmt":"2023-06-06T05:41:00","guid":{"rendered":"https:\/\/amyloidosisalliance.local\/le-forum-de-la-whf-en-suisse\/"},"modified":"2026-09-29T15:32:18","modified_gmt":"2026-09-29T13:32:18","slug":"le-forum-de-la-whf-en-suisse","status":"publish","type":"post","link":"https:\/\/www.amyloidosisalliance.org\/fr\/le-forum-de-la-whf-en-suisse\/","title":{"rendered":"Le forum de la WHF en Suisse"},"content":{"rendered":"\n<p class=\"wp-block-paragraph\">La F\u00e9d\u00e9ration mondiale du c\u0153ur (WHF) a organis\u00e9 les 17 et 18 mai 2023 \u00e0 Gen\u00e8ve (Suisse) un forum sp\u00e9cial intitul\u00e9 \u00ab\u00a0SHINING A LIGHT ON RARE CARDIOVASCULAR DISEASES\u00a0\u00bb (Mettre en lumi\u00e8re les maladies cardiovasculaires rares), en amont du World Heart Summit 2023, tenu du 19 au 21 mai. Des repr\u00e9sentants de patients vivant avec quatre maladies cardiovasculaires rares ont \u00e9t\u00e9 invit\u00e9s \u00e0 apporter le point de vue des patients et \u00e0 faire entendre leur voix pour orienter les strat\u00e9gies de la WHF en mati\u00e8re de diagnostic et de traitement de ces maladies rares\u00a0:<\/p>\n\n<h2 class=\"wp-block-heading\">La table ronde r\u00e9unissait des repr\u00e9sentants de patients atteints des quatre maladies cardiovasculaires rares suivantes\u00a0:\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>l\u2019hypertension art\u00e9rielle pulmonaire (HTAP),\u00a0<\/li>\n\n\n\n<li>l\u2019hypercholest\u00e9rol\u00e9mie familiale homozygote (HFHo)\u00a0<\/li>\n\n\n\n<li>la cardiomyopathie amylo\u00efde \u00e0 transthyr\u00e9tine (ATTR-CM)\u00a0<\/li>\n\n\n\n<li>la cardiomyopathie hypertrophique h\u00e9r\u00e9ditaire\u00a0<\/li>\n<\/ul>\n<\/div>\n\n<p class=\"wp-block-paragraph\">Le forum s\u2019est ouvert sur les propos du Dr Daniel Pi\u00f1eiro, pr\u00e9sident de la WHF, qui a rappel\u00e9 que\u00a0: \u00a0<\/p>\n\n<ul class=\"wp-block-list\">\n<li>La sant\u00e9 est un droit humain, et tous les patients m\u00e9ritent une vie plus longue et une meilleure qualit\u00e9 de vie.<\/li>\n\n\n\n<li>La voix des patients eux-m\u00eames vaut mieux que celle des m\u00e9decins qui parlent en leur nom.\u00a0<\/li>\n<\/ul>\n\n<p class=\"wp-block-paragraph\">Des m\u00e9decins sp\u00e9cialistes de chacune des quatre maladies rares ont fait une pr\u00e9sentation au groupe. La Dre Nikki Bart, de l\u2019Universit\u00e9 de Nouvelle-Galles du Sud (Australie), a particip\u00e9 au forum \u00e0 distance pour aborder les principaux d\u00e9fis auxquels font face les patients atteints d\u2019ATTR-CM. Elle a soulign\u00e9 plusieurs points cl\u00e9s du diagnostic et de la prise en charge de l\u2019ATTR-CM, dont les retards de diagnostic et d\u2019acc\u00e8s aux traitements.\u00a0<\/p>\n\n<p class=\"wp-block-paragraph\">Keith Dares, du Canada, membre de l\u2019Amyloidosis Alliance, est un patient atteint d\u2019ATTR-CM. Il a \u00e9t\u00e9 heureux de participer au forum pour raconter son parcours jusqu\u2019au diagnostic et l\u2019impact de la maladie sur ses activit\u00e9s quotidiennes. Les ateliers ont donn\u00e9 lieu \u00e0 de nombreux \u00e9changes en groupe, qui ont permis d\u2019identifier des pistes d\u2019am\u00e9lioration\u00a0:\u00a0<\/p>\n\n<h2 class=\"wp-block-heading\">Que faut-il pour raccourcir le d\u00e9lai avant un diagnostic exact\u202f?\u00a0<\/h2>\n\n<p class=\"wp-block-paragraph\">Comment mieux outiller les m\u00e9decins g\u00e9n\u00e9ralistes pour \u00e9viter les diagnostics manqu\u00e9s ou erron\u00e9s\u00a0: peut-on encourager \u00e0 \u00e9carter l\u2019amylose plus t\u00f4t, et non plus tard, dans les protocoles de diagnostic\u202f? Peut-on concevoir un outil qui signale les situations d\u2019alerte, pour un diagnostic plus pr\u00e9coce\u202f?\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\">Comment rem\u00e9dier aux in\u00e9galit\u00e9s de diagnostic chez les patientes\u202f?<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Quels mod\u00e8les existent pour les \u00ab\u00a0centres d\u2019excellence\u00a0\u00bb\u202f? Comment am\u00e9liorer l\u2019acc\u00e8s \u00e0 de meilleurs soins\u202f?\u00a0<\/p>\n\n\n\n<p class=\"wp-block-paragraph\">Comment r\u00e9duire les obstacles pour am\u00e9liorer l\u2019acc\u00e8s aux traitements\u202f?\u00a0<\/p>\n<\/div>\n\n<p class=\"wp-block-paragraph\">Lors de la pr\u00e9sentation des conclusions le deuxi\u00e8me jour, il a \u00e9t\u00e9 int\u00e9ressant de constater les difficult\u00e9s communes aux quatre communaut\u00e9s de patients. Tout aussi int\u00e9ressant\u00a0: le potentiel, actuellement \u00e0 l\u2019\u00e9tude, de l\u2019intelligence artificielle et de l\u2019apprentissage automatique pour raccourcir les d\u00e9lais de diagnostic. <\/p>\n\n<p class=\"wp-block-paragraph\">L\u2019objectif de la F\u00e9d\u00e9ration mondiale du c\u0153ur est de s\u2019appuyer sur les informations partag\u00e9es par les patients pour construire un plan de travail qui r\u00e9ponde aux difficult\u00e9s du diagnostic, du traitement et de la prise en charge des personnes atteintes de maladies cardiovasculaires rares.<\/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>Lors d\u2019un forum de la F\u00e9d\u00e9ration mondiale du c\u0153ur \u00e0 Gen\u00e8ve, en mai 2023, des repr\u00e9sentants de patients, notamment pour la cardiomyopathie ATTR, ont pris la parole sur les maladies cardiaques rares.<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24],"tags":[],"class_list":["post-1728","post","type-post","status-publish","format-standard","hentry","category-actualites"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.6 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Le forum de la WHF en Suisse<\/title>\n<meta name=\"description\" content=\"Lors d\u2019un forum de la F\u00e9d\u00e9ration mondiale 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