{"id":39638,"date":"2023-10-09T18:24:27","date_gmt":"2023-10-09T16:24:27","guid":{"rendered":"https:\/\/www.ipsen.com\/?p=39638"},"modified":"2023-11-30T07:45:29","modified_gmt":"2023-11-30T05:45:29","slug":"combler-le-deficit-dinnovation-dans-le-domaine-des-maladies-rares","status":"publish","type":"post","link":"https:\/\/www.ipsen.com\/fr\/rare-diseases-fr\/combler-le-deficit-dinnovation-dans-le-domaine-des-maladies-rares\/","title":{"rendered":"Combler le d\u00e9ficit d&#8217;innovation dans le domaine des maladies rares"},"content":{"rendered":"\n<p>Dans le cadre de la derni\u00e8re \u00e9dition du Forum europ\u00e9en de la sant\u00e9 de Gastein, Ipsen <a href=\"https:\/\/ehfg.live\/recordings\/s20\" target=\"_blank\" rel=\"noreferrer noopener\"><strong><span style=\"text-decoration: underline\">a organis\u00e9 une session interactive de sensibilisation<\/span><\/strong><\/a> sur les d\u00e9fis inh\u00e9rents au d\u00e9veloppement de traitements innovants contre les maladies rares et ultra-rares.\u00a0<\/p>\n\n\n\n<p>Au cours des vingt derni\u00e8res ann\u00e9es, les politiques qui soutiennent la recherche et l&#8217;innovation dans les maladies rares ont favoris\u00e9 de grands progr\u00e8s et suscit\u00e9 de nouveaux espoirs parmi les 300\u202fmillions de personnes dans le monde souffrant d\u2019une maladie rare. Les disparit\u00e9s en mati\u00e8re d&#8217;innovation entre les maladies rares et ultra-rares et les pathologies plus courantes restent toutefois importantes, et devraient encore se creuser si les leviers supportant la recherche et le d\u00e9veloppement venaient \u00e0 reculer.&nbsp;<\/p>\n\n\n\n<p>Le processus de d\u00e9veloppement des traitements contre les maladies rares est un parcours sem\u00e9 d&#8217;emb\u00fbches. Ces pathologies pr\u00e9sentent des d\u00e9fis scientifiques et cliniques uniques, notamment des connaissances restreintes, un manque de parcours de diagnostic et de donn\u00e9es d\u2019histoire naturelle, et des populations de patients limit\u00e9es. La mise au point de traitements exige \u00e0 la fois des ressources substantielles, une passion inconditionnelle et une r\u00e9silience \u00e0 toute \u00e9preuve, non seulement de la part des chercheurs, mais \u00e9galement des professionnels de la sant\u00e9, des patients, de leurs familles et des aidants, qui sont souvent activement impliqu\u00e9s dans le processus de d\u00e9veloppement.&nbsp;<\/p>\n\n\n\n<p>Malgr\u00e9 ces difficult\u00e9s, nous nous attachons \u00e0 la conviction profonde que c\u2019est notre devoir en tant que soci\u00e9t\u00e9 de r\u00e9pondre aux besoins des patients vivant avec une maladie rare, car il n&#8217;existe souvent que tr\u00e8s peu, voire pas du tout, d&#8217;options th\u00e9rapeutiques. 94% des maladies rares n&#8217;ont pas de traitement efficace. Pour stimuler les progr\u00e8s dans ce domaine, des incitations \u00e0 la recherche doivent \u00eatre mises en place, qu&#8217;elles soient de nature \u00e9conomique, r\u00e9glementaire ou juridique, pour encourager l&#8217;innovation et la collaboration entre tous les acteurs du syst\u00e8me de sant\u00e9.&nbsp;<\/p>\n\n\n\n<p>Chaque individu atteint d\u2019une maladie rare a droit \u00e0 la promesse d&#8217;une bonne sant\u00e9, et nous tenons \u00e0 contribuer \u00e0 faire de cette promesse une r\u00e9alit\u00e9.&nbsp;&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Dans le cadre de la derni\u00e8re \u00e9dition du Forum europ\u00e9en de la sant\u00e9 de Gastein, Ipsen a organis\u00e9 une session<\/p>\n","protected":false},"author":11,"featured_media":39634,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"footnotes":""},"categories":[1192],"tags":[],"class_list":["post-39638","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 v22.5 - 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