{"id":4405,"date":"2026-03-30T17:38:43","date_gmt":"2026-03-30T15:38:43","guid":{"rendered":"https:\/\/ph-vzw.be\/?p=4405"},"modified":"2026-06-10T15:01:13","modified_gmt":"2026-06-10T13:01:13","slug":"nouveau-plan-belge-maladies-rares","status":"publish","type":"post","link":"https:\/\/ph-vzw.be\/fr\/2026\/03\/30\/nouveau-plan-belge-maladies-rares\/","title":{"rendered":"Nouveau Plan belge Maladies Rares"},"content":{"rendered":"<p>[vc_row gap=\u00a0\u00bb35&Prime;][vc_column width=\u00a0\u00bb1\/3&Prime;][vc_single_image image=\u00a0\u00bb4377&Prime; img_size=\u00a0\u00bblarge\u00a0\u00bb add_caption=\u00a0\u00bbyes\u00a0\u00bb][\/vc_column][vc_column width=\u00a0\u00bb2\/3&Prime;][vc_column_text]<!--StartFragment --><\/p>\n<h2>Nouveau Plan belge Maladies Rares !<\/h2>\n<p>Le 25 f\u00e9vrier 2026, le ministre f\u00e9d\u00e9ral de la Sant\u00e9 publique, Frank Vandenbroucke, a pr\u00e9sent\u00e9 le nouveau Plan belge Maladies Rares 2026\u20112030. L\u2019objectif est d\u2019am\u00e9liorer la qualit\u00e9 de vie du plus grand nombre possible de patients atteints d\u2019une maladie rare.<\/p>\n<p><span style=\"color: #000000;\">Les principaux acteurs qui ont contribu\u00e9 \u00e0 ce nouveau plan sont:<\/span>\u00a0les huit H\u00f4pitaux de R\u00e9f\u00e9rence pour les Maladies Rares, Sciensano, le Coll\u00e8ge des m\u00e9decins pour les m\u00e9dicaments orphelins, la Fondation Roi Baudouin et, bien entendu, RaDiOrg.<\/p>\n<p>Aujourd\u2019hui, les patients atteints d\u2019une maladie rare attendent en moyenne pr\u00e8s de cinq ans avant d\u2019obtenir un diagnostic correct. <span style=\"color: #000000;\" data-olk-copy-source=\"MessageBody\">Ce nouveau plan <\/span>du ministre de la Sant\u00e9 publique, Frank Vandenbroucke (Vooruit), vise \u00e0 r\u00e9duire drastiquement ce d\u00e9lai et \u00e0 mieux organiser les soins. L\u2019histoire de Wendy Vansteenkiste, qui a cherch\u00e9 pendant deux ans une explication \u00e0 ses sympt\u00f4mes et a failli y perdre la vie, montre \u00e0 quel point ce changement est urgent.<\/p>\n<h3>Un diagnostic qui arrive trop tard<\/h3>\n<p><a href=\"https:\/\/ph-vzw.be\/fr\/ph-belgie\/qui-sommes-nous\/\">Wendy Vansteenkiste<\/a> a re\u00e7u en 2009 le diagnostic d\u2019hypertension art\u00e9rielle pulmonaire, une maladie rare et grave des poumons. Avant cela, elle avait re\u00e7u de mauvais diagnostics, des conseils inadapt\u00e9s et sa sant\u00e9 ne cessait de se d\u00e9t\u00e9riorer. Ce n\u2019est qu\u2019au moment o\u00f9 un m\u00e9decin de l\u2019UZ Gent a reconnu sa maladie que le bon traitement a pu \u00eatre administr\u00e9 \u00e0 temps.<\/p>\n<p>Sa conclusion est sans appel : dans le domaine des maladies rares, la chance joue encore trop souvent un r\u00f4le d\u00e9cisif \u2014 la chance que quelqu\u2019un reconnaisse la maladie, la chance d\u2019arriver au bon endroit au bon moment.<\/p>\n<p><!--EndFragment -->[\/vc_column_text][\/vc_column][\/vc_row]<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Nouveau Plan belge Maladies Rares, le ministre f\u00e9d\u00e9ral de la Sant\u00e9 publique, a pr\u00e9sent\u00e9 le nouveau Plan belge Maladies Rares 2026\u20112030.<\/p>\n","protected":false},"author":12,"featured_media":4377,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"footnotes":""},"categories":[10],"tags":[82,64],"class_list":["post-4405","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-non-classifiee","tag-centres","tag-maladies-rares"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v21.1 - 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