{"id":3933,"date":"2024-09-17T10:37:22","date_gmt":"2024-09-17T14:37:22","guid":{"rendered":"https:\/\/sleepconsortium.org\/?p=3933"},"modified":"2024-09-17T10:39:16","modified_gmt":"2024-09-17T14:39:16","slug":"voice-of-the-patient-report-documents-crucial-insights-into-living-with-idiopathic-hypersomnia","status":"publish","type":"post","link":"https:\/\/sleepconsortium.org\/fr\/news\/voice-of-the-patient-report-documents-crucial-insights-into-living-with-idiopathic-hypersomnia\/","title":{"rendered":"Le rapport Voice of the Patient documente des informations cruciales sur la vie avec l'hypersomnie idiopathique"},"content":{"rendered":"<div data-elementor-type=\"wp-post\" data-elementor-id=\"3933\" class=\"elementor elementor-3933\" data-elementor-post-type=\"post\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-f85cbc1 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"f85cbc1\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-4ffb360\" data-id=\"4ffb360\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-cb2a0ef elementor-widget elementor-widget-heading\" data-id=\"cb2a0ef\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Le rapport Voice of the Patient documente des informations cruciales sur la vie avec l'hypersomnie idiopathique<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c717c5c elementor-widget elementor-widget-heading\" data-id=\"c717c5c\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Un nouveau rapport met en lumi\u00e8re les exp\u00e9riences r\u00e9elles et les besoins de traitement des personnes souffrant d'hypersomnie idiopathique<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-8f5f1a5 elementor-section-full_width elementor-section-height-default elementor-section-height-default\" data-id=\"8f5f1a5\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-2568678\" data-id=\"2568678\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-daf6e32 elementor-widget elementor-widget-text-editor\" data-id=\"daf6e32\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t\t\t\t\t<p class=\"p1\">West Palm Beach, Fla., Sept. 17, 2024 \/PRNewswire\/ - Le Sleep Consortium, en partenariat avec une coalition d'organisations mondiales de d\u00e9fense des droits des patients li\u00e9s au sommeil, est fier d'annoncer la publication du <a href=\"https:\/\/sleepconsortium.org\/fr\/illuminate-hypersomnia\/\"><span class=\"s1\">\"Rapport \"La voix du patient<\/span><\/a> sur l'hypersomnie idiopathique (HI). Ce document essentiel, fruit de l'initiative Illuminate Hypersomnia, offre une vue d'ensemble des exp\u00e9riences v\u00e9cues et des aspirations en mati\u00e8re de traitement des personnes souffrant d'IH.<\/p><p class=\"p1\">Le rapport \"Voice of the Patient\" s'appuie sur les nombreux commentaires recueillis lors d'une r\u00e9union sur le d\u00e9veloppement de m\u00e9dicaments ax\u00e9s sur les patients (EL-PFDD) qui s'est tenue le 11 avril 2024 et sur une enqu\u00eate d\u00e9taill\u00e9e \u00e0 laquelle 811 personnes vivant dans 21 pays ont r\u00e9pondu. Ce rapport novateur vise \u00e0 mettre en lumi\u00e8re les d\u00e9fis importants auxquels sont confront\u00e9es les personnes vivant avec l'IH, en fournissant des informations pr\u00e9cieuses aux r\u00e9gulateurs, aux d\u00e9veloppeurs de produits pharmaceutiques, aux chercheurs, aux professionnels de la sant\u00e9 et aux d\u00e9cideurs politiques.<\/p><p class=\"p1\">L'initiative Illuminate Hypersomnia a \u00e9t\u00e9 con\u00e7ue pour faire entendre la voix des personnes touch\u00e9es par l'hypersomnie. En explorant leurs r\u00e9cits personnels, les strat\u00e9gies de prise en charge actuelles et les besoins de traitement non satisfaits, le rapport cherche \u00e0 orienter la recherche future et le d\u00e9veloppement de th\u00e9rapies. Il s'agit d'un effort parall\u00e8le \u00e0 l'initiative PFDD de la Food and Drug Administration des \u00c9tats-Unis visant \u00e0 recueillir plus syst\u00e9matiquement les points de vue des patients sur leur maladie et les th\u00e9rapies disponibles pour la traiter. Le rapport IH a \u00e9t\u00e9 soumis \u00e0 la FDA pour \u00eatre publi\u00e9 sur la page web de l'agence, \u00e0 l'adresse suivante <span class=\"s1\">rapports de r\u00e9unions sp\u00e9cifiques aux conditions<\/span>.<\/p><p class=\"p1\">\"Pour la premi\u00e8re fois, une exposition \u00e0 360 degr\u00e9s de l'exp\u00e9rience v\u00e9cue de l'HI est d\u00e9peinte avec honn\u00eatet\u00e9 et vuln\u00e9rabilit\u00e9 \u00e0 une \u00e9chelle jamais vue, entendue ou publi\u00e9e auparavant\", a d\u00e9clar\u00e9 Claire Wylds-Wright, cofondatrice et directrice de l'exp\u00e9rience du Consortium du sommeil. \"Ce rapport opportun est sans \u00e9quivoque dans sa proclamation individuelle et collective que vivre pendant des ann\u00e9es avec un diagnostic, et des ann\u00e9es suppl\u00e9mentaires sans traitement ad\u00e9quat pour l'IH peut faire des ravages sur tous les aspects de la vie d'un individu. Cette d\u00e9claration de la communaut\u00e9 sur ce que c'est que de vivre avec l'IH exige un appel \u00e0 l'action auquel les personnes en position de responsabilit\u00e9 et d'opportunit\u00e9 doivent r\u00e9pondre en cons\u00e9quence. Lisez ce rapport, assimilez-le, partagez-le. Et aidez \u00e0 soulager ceux qui ont eu le courage de nous dire ce dont ils ont besoin.<\/p><p class=\"p1\">Les principales conclusions du rapport sont les suivantes :<\/p><p class=\"p1\">- L'ensemble des sympt\u00f4mes qui entravent de mani\u00e8re significative le fonctionnement quotidien, y compris la caract\u00e9ristique IH de la somnolence diurne \"irr\u00e9pressible\", l'alt\u00e9ration de la qualit\u00e9 de l'\u00e9veil et le \"brouillard c\u00e9r\u00e9bral\" qui persiste tout au long de la journ\u00e9e.<\/p><p class=\"p1\">- Les longues odyss\u00e9es diagnostiques sont la norme, le temps \u00e9coul\u00e9 entre l'apparition des sympt\u00f4mes et le diagnostic allant de 0 \u00e0 67 ans, avec une moyenne de 14 ans de retard diagnostique d'apr\u00e8s les r\u00e9ponses \u00e0 l'enqu\u00eate.<\/p><p class=\"p1\">- Les limites des traitements actuels, m\u00eame lorsqu'ils sont combin\u00e9s, et le besoin urgent d'options th\u00e9rapeutiques plus efficaces. Soixante pour cent des r\u00e9pondants \u00e0 l'enqu\u00eate ont indiqu\u00e9 que l'IH n'est pas du tout contr\u00f4l\u00e9e ou qu'elle est mal contr\u00f4l\u00e9e.<\/p><p class=\"p1\">- Cette stigmatisation et cette incr\u00e9dulit\u00e9 quant \u00e0 la r\u00e9alit\u00e9 de l'IH ajoutent consid\u00e9rablement au fardeau que subissent les personnes atteintes d'IH ; elles souhaitent de toute urgence \u00eatre crues, \u00eatre prises au s\u00e9rieux et \u00eatre trait\u00e9es avec plus de respect et de dignit\u00e9.<\/p><p class=\"p1\">Ce rapport de 80 pages en couleur devrait constituer une ressource essentielle pour faire avancer le dialogue sur l'HID et soutenir le d\u00e9veloppement de th\u00e9rapies cibl\u00e9es. Il renforce \u00e9galement l'engagement continu du Sleep Consortium et de ses partenaires, notamment l'Associa\u00e7\u00e3o Brasileira de Narcolepsia e Hipersonia Idiop\u00e1tica, Damm Good Sleep, Days4Naps, European Narcolepsy Alliance for Patients, Hypersomnia Alliance, Hypersomnia Foundation, Hypersomnolence Australia, Hypersomnolence Support Network Japan, Project Sleep et PWN4PWN, en vue d'am\u00e9liorer les r\u00e9sultats pour les personnes souffrant d'IH.<\/p><p class=\"p1\">Afin de poursuivre le travail que cette initiative a permis de galvaniser, la Fondation Hypersomnie organisera une conf\u00e9rence sur le th\u00e8me de l'hypersomnie. <a href=\"https:\/\/www.hypersomniafoundation.org\/event\/beyondsleepyatlanta\/\"><span class=\"s1\">#BeyondSleepy conf\u00e9rence satellite<\/span><\/a> \u00e0 Atlanta le 19 octobre 2024, avec une journ\u00e9e de programmes et de points de connexion pour les personnes vivant avec l'IH et d'autres troubles du sommeil. D'autres \u00e9v\u00e9nements \u00e9ducatifs et de recherche sont en cours de planification afin de maintenir l'\u00e9lan.<\/p><p class=\"p1\">Les organisations qui soutiennent g\u00e9n\u00e9reusement l'initiative Illuminate Hypersomnia par des subventions \u00e9ducatives sans restriction sont les suivantes : Alkermes, Avadel Pharmaceuticals, Centessa Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda et Zevra Therapeutics.<\/p><p class=\"p1\">Pour plus d'informations sur le rapport \"Voice of the Patient\" et pour acc\u00e9der au document complet, veuillez consulter le site suivant <a href=\"https:\/\/bit.ly\/illuminate-IH\"><span class=\"s1\">https:\/\/bit.ly\/illuminate-IH<\/span><\/a>.<\/p><p class=\"p1\"><strong>**A propos de Sleep Consortium**<\/strong><\/p><p class=\"p1\">Le Consortium du sommeil est une organisation enregistr\u00e9e \u00e0 but non lucratif qui se consacre \u00e0 l'avancement de la recherche, de la compr\u00e9hension et du traitement des troubles centraux de l'hypersomnolence, y compris l'hypersomnie idiopathique. Gr\u00e2ce \u00e0 des efforts de collaboration et \u00e0 une recherche innovante, le Consortium vise \u00e0 am\u00e9liorer la vie des personnes touch\u00e9es par ces troubles rares et difficiles.<\/p><p class=\"p1\"><strong>**CONTACT M\u00c9DIA:**<\/strong><\/p><p class=\"p1\">Lindsay Jesteadt, PhD\u00a0<\/p><p class=\"p1\">Co-fondateur et PDG, Sleep Consortium\u00a0<\/p><p class=\"p1\">Courriel : <a href=\"mailto:PFDD@sleepconsortium.org\">PFDD@sleepconsortium.org<\/a><\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>Le Sleep Consortium, en partenariat avec une coalition d'organisations mondiales de d\u00e9fense des patients souffrant de troubles du sommeil, est fier d'annoncer la publication du rapport \"Voice of the Patient\" sur l'hypersomnie idiopathique (IH). <\/p>","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"inline_featured_image":false,"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":"var(--ast-global-color-4)","background-image":"","background-repeat":"repeat","background-position":"center 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