{"id":100804,"date":"2026-02-27T17:47:05","date_gmt":"2026-02-27T15:47:05","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=100804"},"modified":"2026-02-27T17:52:01","modified_gmt":"2026-02-27T15:52:01","slug":"ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/","title":{"rendered":"\u00c9couter n\u2019est pas un slogan, c\u2019est le fondement de la prise en charge des maladies rares"},"content":{"rendered":"\n<p><em>Par Josep Catlla, EVP, Corporate Affairs Officer, Ipsen<\/em><\/p>\n\n\n\n<p>Chaque ann\u00e9e, la Journ\u00e9e des maladies rares nous rappelle que ces pathologies touchent bien plus de personnes qu\u2019on ne l\u2019imagine : plus de 300&nbsp;millions dans le monde, r\u00e9partis sur plus de 10&nbsp;000 maladies rares identifi\u00e9es. Pourtant, ce qui me frappe le plus en cette journ\u00e9e de reconnaissance et de r\u00e9flexion, c\u2019est que l\u2019\u00e9coute des patients reste un levier encore sous\u2011exploit\u00e9 pour faire progresser les soins de sant\u00e9.<\/p>\n\n\n\n<p>\u00c9couter les patients n\u2019est pas simplement un \u00ab&nbsp;plus&nbsp;\u00bb. C\u2019est l\u2019un des leviers les plus puissants pour am\u00e9liorer la recherche, le d\u00e9veloppement, la r\u00e9gulation, l\u2019acc\u00e8s et la prise en charge tout au long de la vie. Lorsque nous int\u00e9grons les perspectives des patients en amont, nous r\u00e9duisons les risques scientifiques, concevons de meilleurs essais cliniques et acc\u00e9l\u00e9rons l\u2019acc\u00e8s \u00e0 des traitements r\u00e9ellement significatifs.<\/p>\n\n\n\n<p>Nous le constatons chaque jour. Maria, dont le fils a \u00e9t\u00e9 diagnostiqu\u00e9 tardivement d\u2019une atr\u00e9sie biliaire, nous a confi\u00e9&nbsp;: \u00ab&nbsp;Si j\u2019avais eu plus d\u2019informations et un diagnostic plus rapide, nous aurions peut\u2011\u00eatre \u00e9vit\u00e9 la greffe.&nbsp;\u00bb Wendy, qui vit avec une CBP, a partag\u00e9&nbsp;: \u00ab&nbsp;Je veux juste qu\u2019on m\u2019\u00e9coute. La CBP affecte de nombreux aspects de la vie, pas seulement les tests h\u00e9patiques.&nbsp;\u00bb<\/p>\n\n\n\n<p>Leurs exp\u00e9riences refl\u00e8tent une r\u00e9alit\u00e9 plus large&nbsp;: des diagnostics retard\u00e9s, une prise en charge in\u00e9gale, et des sympt\u00f4mes souvent minimis\u00e9s. Derri\u00e8re chaque statistique se trouve une personne qui esp\u00e8re une vie ordinaire&nbsp;: dormir, \u00e9tudier, travailler, pr\u00e9server sa dignit\u00e9, vivre dans la stabilit\u00e9.<\/p>\n\n\n\n<p>\u00c9couter, c\u2019est comprendre la personne dans sa globalit\u00e9, au\u2011del\u00e0 de la biologie. Les maladies rares perturbent l\u2019\u00e9ducation, l\u2019emploi, la sant\u00e9 mentale et la vie familiale. Les analyses \u00e9conomiques montrent de fa\u00e7on constante que la charge la plus lourde repose sur les familles&nbsp;: perte de revenus, r\u00f4le d\u2019aidant, co\u00fbts personnels. L\u2019\u00e9coute n\u2019est donc pas une simple courtoisie. C\u2019est une strat\u00e9gie d\u2019\u00e9quit\u00e9 et de r\u00e9silience soci\u00e9tale.<\/p>\n\n\n\n<p>Tout au long du cycle de vie des soins et des traitements, nous pouvons transformer l\u2019\u00e9coute en r\u00e9sultats concrets gr\u00e2ce \u00e0 une approche structur\u00e9e et int\u00e9gr\u00e9e&nbsp;: collaborer avec les patients pour d\u00e9finir des crit\u00e8res d\u2019\u00e9valuation pertinents dans les essais cliniques&nbsp;; s\u2019aligner tr\u00e8s t\u00f4t avec les autorit\u00e9s r\u00e9glementaires et les instances d\u2019\u00e9valuation des technologies de sant\u00e9&nbsp;; int\u00e9grer les insights patients dans les soins courants&nbsp;; mesurer les r\u00e9sultats qui comptent vraiment&nbsp;: travail, apprentissage, bien\u2011\u00eatre mental, charge des aidants.<\/p>\n\n\n\n<p>Chez Ipsen, nous sommes engag\u00e9s \u00e0 int\u00e9grer la voix du patient depuis la recherche jusqu\u2019\u00e0 la prise en charge tout au long de la vie. Mais cette responsabilit\u00e9 est partag\u00e9e par l\u2019ensemble de l\u2019\u00e9cosyst\u00e8me. Ainsi, si nous voulons v\u00e9ritablement aider les personnes vivant avec une maladie rare \u00e0 accomplir plus que ce que l\u2019on imagine \u2014 le th\u00e8me annuel de la Journ\u00e9e des maladies rares \u2014 \u00e9couter les patients ne peut pas rester une ambition fond\u00e9e sur des valeurs. Cela doit devenir une pratique r\u00e9guli\u00e8re dans la recherche, le d\u00e9veloppement, les essais cliniques, la r\u00e9gulation, l\u2019\u00e9valuation, l\u2019acc\u00e8s et la prise en charge \u00e0 chaque \u00e9tape.<\/p>\n\n\n\n<p>Ce n\u2019est qu\u2019en \u00e9coutant davantage que nous parlons que nous pourrons aider les personnes vivant avec une maladie rare \u00e0 accomplir plus que ce qu\u2019elles n\u2019auraient jamais imagin\u00e9 \u2014 et plus que ce que le syst\u00e8me a historiquement permis.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Par Josep Catlla, EVP, Corporate Affairs Officer, Ipsen Chaque ann\u00e9e, la Journ\u00e9e des maladies rares nous rappelle que ces pathologies<\/p>\n","protected":false},"author":9,"featured_media":100801,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":""},"categories":[1192],"tags":[],"class_list":["post-100804","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-rare-diseases-fr","entry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Journ\u00e9e des maladies rares - \u00c9couter n\u2019est pas un slogan<\/title>\n<meta name=\"description\" content=\"la Journ\u00e9e des maladies rares nous rappelle que ces pathologies touchent bien plus de personnes qu\u2019on ne l\u2019imagine : plus de 300 millions dans le monde, r\u00e9partis sur plus de 10 000 maladies rares identifi\u00e9es. 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Pourtant, ce qui me frappe le plus en cette journ\u00e9e de reconnaissance et de r\u00e9flexion, c\u2019est que l\u2019\u00e9coute des patients reste un levier encore sous\u2011exploit\u00e9 pour faire progresser les soins de sant\u00e9.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/\" \/>\n<meta property=\"og:site_name\" content=\"Global\" \/>\n<meta property=\"article:published_time\" content=\"2026-02-27T15:47:05+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2026-02-27T15:52:01+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/02\/Josep-Catlla-EVP-Corporate-Affairs-2026.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1080\" \/>\n\t<meta property=\"og:image:height\" content=\"720\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"konstantinoskampanos\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@ipsengroup\" \/>\n<meta name=\"twitter:site\" content=\"@ipsengroup\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"konstantinoskampanos\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"3 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/\"},\"author\":{\"name\":\"konstantinoskampanos\",\"@id\":\"https:\/\/www.ipsen.com\/fr\/#\/schema\/person\/caf513ba91f9535b6b2d8a79d95764c5\"},\"headline\":\"\u00c9couter n\u2019est pas un slogan, c\u2019est le fondement de la prise en charge des maladies rares\",\"datePublished\":\"2026-02-27T15:47:05+00:00\",\"dateModified\":\"2026-02-27T15:52:01+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/\"},\"wordCount\":650,\"publisher\":{\"@id\":\"https:\/\/www.ipsen.com\/fr\/#organization\"},\"image\":{\"@id\":\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/02\/Josep-Catlla-EVP-Corporate-Affairs-2026.jpg\",\"articleSection\":[\"Maladies Rares\"],\"inLanguage\":\"fr-FR\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/\",\"url\":\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/\",\"name\":\"Journ\u00e9e des maladies rares - \u00c9couter n\u2019est pas un slogan\",\"isPartOf\":{\"@id\":\"https:\/\/www.ipsen.com\/fr\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/www.ipsen.com\/fr\/actualites\/rare-diseases-fr\/ecouter-nest-pas-un-slogan-cest-le-fondement-de-la-prise-en-charge-des-maladies-rares\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/www.ipsen.com\/wp-content\/uploads\/2026\/02\/Josep-Catlla-EVP-Corporate-Affairs-2026.jpg\",\"datePublished\":\"2026-02-27T15:47:05+00:00\",\"dateModified\":\"2026-02-27T15:52:01+00:00\",\"description\":\"la Journ\u00e9e des maladies rares nous rappelle que ces pathologies touchent bien plus de personnes qu\u2019on ne l\u2019imagine : plus de 300 millions dans le monde, r\u00e9partis sur plus de 10 000 maladies rares identifi\u00e9es. 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