{"id":13988,"date":"2025-03-23T19:47:54","date_gmt":"2025-03-23T18:47:54","guid":{"rendered":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/?p=13988"},"modified":"2025-03-24T10:00:07","modified_gmt":"2025-03-24T09:00:07","slug":"17-avril-2025-journee-internationale-sur-la-maladie-de-waldenstrom","status":"publish","type":"post","link":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/17-avril-2025-journee-internationale-sur-la-maladie-de-waldenstrom\/","title":{"rendered":"17 avril 2025 : Journ\u00e9e internationale sur la maladie de Waldenstr\u00f6m"},"content":{"rendered":"\n

Vous n’\u00eates pas seul !<\/strong><\/h2>\n\n\n\n

Cette maladie rare a \u00e9t\u00e9 d\u00e9couverte en 1944 par le Dr Jan G\u00f6sta Waldenstr\u00f6m, le 17 avril \u00e9tant sa date de naissance.<\/p>\n\n\n\n

En France cette maladie est connue avec le d\u00e9c\u00e8s du Pr\u00e9sident Georges Pompidou qui \u00e9tait atteint de cette affection.<\/p>\n\n\n\n

Nous devons l\u2019initiative de cette journ\u00e9e internationale sur la macroglobulin\u00e9mie de Waldenstr\u00f6m<\/strong> \u00e0 L\u2019IWMF (Fondation Internationale de la Macroglobulin\u00e9mie de Waldenstr\u00f6m bas\u00e9e aux \u00c9tats-Unis) qui agit sur tous les continents pour aider les malades et d\u00e9velopper la recherche.<\/p>\n\n\n\n

\"\"<\/figure><\/div>\n\n\n\n

Il s\u2019agit d\u2019une maladie rare. On recense en moyenne chaque ann\u00e9e 4 nouveaux cas par million d\u2019habitants, soit environ 180 \u00e0 300 cas en France par an. Peu de m\u00e9dias diffusent ainsi de l\u2019information relative \u00e0 cette pathologie en raison de la faible population concern\u00e9e et de son \u00e9parpillement sur toute la France.<\/p>\n\n\n\n

Cette maladie est peu connue, mais il existe heureusement des sp\u00e9cialistes en France, cependant pas encore assez nombreux. C\u2019est pour cette raison que notre association \u00ab Waldenstr\u00f6m France \u00bb est primordiale pour les malades et doit \u00eatre connue d\u2019eux.<\/p>\n\n\n\n

L\u2019objectif de notre association est de faire comprendre la maladie, d\u2019informer sur les traitements disponibles et d\u2019apporter du soutien aux patients et \u00e0 leurs aidants.<\/p>\n\n\n\n

Notre site internet – www.waldenstromfrance.org<\/a> – contient des documents et des informations sur cette maladie comme le \u00ab Guide Patient<\/a><\/strong> \u00bb que nous distribuons aux h\u00e9matologues et centres de soins. Tous nos documents sont valid\u00e9s par un comit\u00e9 scientifique.<\/p>\n\n\n\n

Notre organisation en r\u00e9seau, avec des d\u00e9l\u00e9gu\u00e9s r\u00e9gionaux<\/strong> dans toutes les grandes r\u00e9gions de France<\/strong>,<\/a> permet plus de proximit\u00e9 avec les adh\u00e9rents, les personnes atteintes de cette maladie en recherche d\u2019informations, ainsi que leurs aidants. N’h\u00e9sitez pas \u00e0 vous rapprocher d’eux si vous avez des questions ou besoin d’\u00eatre conseill\u00e9s.<\/p>\n\n\n\n

Notre raison d\u2019\u00eatre est aussi que chaque malade ne se sente pas isol\u00e9 \u00ab Vous n\u2019\u00eates pas seul<\/strong> \u00bb. Pouvoir \u00e9changer entre malades donne beaucoup de r\u00e9confort. Nous organisons des rencontres entre malades, soit en visioconf\u00e9rence, soit lors de journ\u00e9es de rencontre en pr\u00e9sentiel avec des m\u00e9decins sp\u00e9cialis\u00e9s dans cette pathologie.<\/p>\n\n\n\n

\u00c0 l’occasion du 17 avril, certains d\u00e9l\u00e9gu\u00e9s organisent des rencontres locales autour d’une bonne table. Vous aussi pouvez proposer d’organiser une rencontre en pr\u00e9sentiel pour rencontrer les Walds autour de vous. Nous pouvons vous aider dans cette initiative, contactez nous<\/a>.<\/p>\n\n\n\n

Notre derni\u00e8re r\u00e9union Patients – M\u00e9decins ou nous avons \u00e9t\u00e9 accueillis par le CHU de Poitiers s\u2019est d\u00e9roul\u00e9e le 21 septembre 2024. <\/p>\n\n\n\n

Notre prochaine journ\u00e9e se d\u00e9roulera \u00e0 Chantilly le 21 mai 2025<\/a>. Cette rencontre extraordinaire organis\u00e9e dans le cadre du Consortium Europ\u00e9en de la Waldenstr\u00f6m<\/strong> sera l\u2019occasion de rencontrer 80 sp\u00e9cialistes de plusieurs pays. Pour la premi\u00e8re fois Waldenstr\u00f6m France sera aux c\u00f4t\u00e9s de l\u2019IWMF pour organiser cette rencontre.<\/p>\n\n\n\n

Gr\u00e2ce aux m\u00e9dias qui voudront bien nous publier, nous esp\u00e9rons pouvoir nous faire conna\u00eetre d\u2019un public plus large et par voie de cons\u00e9quence permettre aux malades atteints de cette affection, dont le nom est bien compliqu\u00e9 \u00e0 prononcer, de se sentir soutenus.<\/p>\n\n\n\n

Si vous \u00eates en relation avec la presse et susceptible de relayer cet article contactez nous<\/a>.<\/p>\n\n\n\n

L\u2019association est \u00e0 votre disposition pour tout compl\u00e9ment d\u2019information, n\u2019h\u00e9sitez pas \u00e0 nous contacter et \u00e0 relayer ce message aupr\u00e8s de vous<\/p>\n","protected":false},"excerpt":{"rendered":"

Vous n’\u00eates pas seul ! Cette maladie rare a \u00e9t\u00e9 d\u00e9couverte en 1944 par le Dr Jan G\u00f6sta Waldenstr\u00f6m, le 17 avril \u00e9tant sa date de naissance. En France cette […]<\/p>\n","protected":false},"author":107,"featured_media":14005,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_uag_custom_page_level_css":"","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":"","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":""},"categories":[12],"tags":[],"class_list":["post-13988","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actu"],"acf":[],"yoast_head":"\n17 avril 2025 : Journ\u00e9e internationale sur la maladie de Waldenstr\u00f6m - Waldenstr\u00f6m France<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/waldenstromfrance.org\/17-avril-2025-journee-internationale-sur-la-maladie-de-waldenstrom\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"17 avril 2025 : Journ\u00e9e internationale sur la maladie de Waldenstr\u00f6m - Waldenstr\u00f6m France\" \/>\n<meta property=\"og:description\" content=\"Vous n’\u00eates pas seul ! 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France","author_link":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/author\/vdebaix\/"},"uagb_comment_info":0,"uagb_excerpt":"Vous n’\u00eates pas seul ! Cette maladie rare a \u00e9t\u00e9 d\u00e9couverte en 1944 par le Dr Jan G\u00f6sta Waldenstr\u00f6m, le 17 avril \u00e9tant sa date de naissance. En France cette […]","_links":{"self":[{"href":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/wp-json\/wp\/v2\/posts\/13988","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/wp-json\/wp\/v2\/users\/107"}],"replies":[{"embeddable":true,"href":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/wp-json\/wp\/v2\/comments?post=13988"}],"version-history":[{"count":17,"href":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/wp-json\/wp\/v2\/posts\/13988\/revisions"}],"predecessor-version":[{"id":14010,"href":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/wp-json\/wp\/v2\/posts\/13988\/revisions\/14010"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/wp-json\/wp\/v2\/media\/14005"}],"wp:attachment":[{"href":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/wp-json\/wp\/v2\/media?parent=13988"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/wp-json\/wp\/v2\/categories?post=13988"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/dev8.id-interactive.fr\/waldenstrom\/wp-json\/wp\/v2\/tags?post=13988"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}