{"id":3834,"date":"2023-12-07T14:36:12","date_gmt":"2023-12-07T14:36:12","guid":{"rendered":"https:\/\/sleepconsort.wpengine.com\/?p=3834"},"modified":"2023-12-07T15:49:26","modified_gmt":"2023-12-07T15:49:26","slug":"illuminate-hypersomnia-initiative-shines-light","status":"publish","type":"post","link":"https:\/\/sleepconsortium.org\/fr\/news\/illuminate-hypersomnia-initiative-shines-light\/","title":{"rendered":"L'initiative Illuminate Hypersomnia met en lumi\u00e8re ce que c'est que de vivre avec une hypersomnie idiopathique"},"content":{"rendered":"
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L'initiative Illuminate Hypersomnia met en lumi\u00e8re ce que c'est que de vivre avec une hypersomnie idiopathique<\/h2>\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
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La communaut\u00e9 mondiale s'unit pour mettre en lumi\u00e8re les d\u00e9fis et les aspirations en mati\u00e8re de traitement des personnes atteintes d'hypersomnie idiopathique<\/i><\/p>

WEST PALM BEACH, Fla., Dec. 7, 2023 \/PRNewswire\/ - Le Sleep Consortium, en collaboration avec des organisations de d\u00e9fense des patients li\u00e9s au sommeil dans le monde entier, annonce l'initiative Illuminate Hypersomnia, un effort novateur visant \u00e0 mettre en \u00e9vidence l'exp\u00e9rience v\u00e9cue de l'hypersomnie idiopathique (IH). Cette initiative vise \u00e0 d\u00e9crire de mani\u00e8re exhaustive l'impact de l'IH sur la vie des personnes touch\u00e9es, leurs strat\u00e9gies de gestion actuelles et les avantages du traitement qui comptent le plus pour eux, \u00e0 mesure que de nouvelles th\u00e9rapies sont d\u00e9velopp\u00e9es.<\/p>

\"save<\/a>Le 11 avril 2024, de 12h00 \u00e0 16h00 (ET), l'initiative Illuminate Hypersomnia accueillera une r\u00e9union virtuelle de d\u00e9veloppement de m\u00e9dicaments ax\u00e9s sur le patient (PFDD), men\u00e9e en parall\u00e8le \u00e0 l'initiative PFDD de la Food and Drug Administration des \u00c9tats-Unis. La r\u00e9union sera diffus\u00e9e en direct et rassemblera les membres de la communaut\u00e9 mondiale de l'IH pour qu'ils partagent leurs exp\u00e9riences et leurs points de vue. En outre, une enqu\u00eate PFDD sera men\u00e9e au d\u00e9but de l'ann\u00e9e 2024 afin d'assurer une compr\u00e9hension globale des d\u00e9fis auxquels sont confront\u00e9es le plus grand nombre possible de personnes atteintes d'IH. Un rapport \"Voice of the Patient\" r\u00e9sumera les id\u00e9es recueillies lors de la r\u00e9union et de l'enqu\u00eate PFDD, cr\u00e9ant ainsi une ressource inestimable pour les chercheurs, les promoteurs de d\u00e9veloppement de m\u00e9dicaments, les organismes de r\u00e9glementation, les professionnels de la sant\u00e9 et d'autres.<\/p>

L'initiative Illuminate Hypersomnia vise \u00e9galement \u00e0 d\u00e9velopper la collaboration et le soutien au sein de la communaut\u00e9 des personnes atteintes d'hypersomnie afin d'aider les individus \u00e0 apprendre les uns des autres et \u00e0 se renforcer mutuellement. Les organisations partenaires sont les suivantes Associa\u00e7\u00e3o Brasileira de Narcolepsia e Hipersonia Idiop\u00e1tica, Damm Good Sleep, Days4Naps, Hypersomnia Alliance, Hypersomnia Foundation, Hypersomnolence Australia, Hypersomnolence Support Network Japan, Project Sleep et PWN4PWN.<\/p>

Les premi\u00e8res nouvelles de l'initiative ont suscit\u00e9 l'int\u00e9r\u00eat du monde entier, ce qui confirme la n\u00e9cessit\u00e9 de cette initiative. Une femme vivant dans le Queensland, en Australie, \u00e9crit : \"Des d\u00e9cennies de retard dans le diagnostic et l'absence d'options th\u00e9rapeutiques efficaces se traduisent par une \u00e9norme perte de potentiel humain. Je pleure ce que ma vie aurait pu \u00eatre\". Dans une r\u00e9gion rurale du Texas, une femme \u00e9crit : \"Cela fait plus de 20 ans que je lutte contre la maladie de Crohn. Aucun m\u00e9dicament n'est efficace en permanence. Je d\u00e9teste ce que les m\u00e9dicaments me font ressentir. J'aspire \u00e0 un traitement qui m'aiderait \u00e0 avoir plus d'\u00e9nergie et \u00e0 mieux me concentrer\". Cette demande pleine d'espoir d'une personne de l'Ontario, au Canada, fait \u00e9cho \u00e0 de nombreuses autres demandes re\u00e7ues : \"Je veux de meilleures options de traitement pour m'aider et aider d'autres personnes atteintes d'IH \u00e0 vivre une vie normale !<\/p>

\"Notre mission avec l'initiative Illuminate Hypersomnia est claire : mettre en lumi\u00e8re les luttes cach\u00e9es de l'hypersomnie idiopathique et s'unir dans la qu\u00eate de meilleurs traitements\", a remarqu\u00e9 le PDG de Sleep Consortium Lindsay Jesteadt, PhD. \"Nous nous engageons pleinement \u00e0 donner les moyens \u00e0 la communaut\u00e9 de l'hypersomnie idiopathique, \u00e0 favoriser la collaboration et \u00e0 stimuler l'innovation pour un avenir o\u00f9 les personnes concern\u00e9es pourront profiter pleinement de la vie sans le poids d'une fatigue constante.\"<\/p>

Les organisations qui soutiennent g\u00e9n\u00e9reusement l'initiative Illuminate Hypersomnia par des subventions \u00e9ducatives sans restriction sont Alkermes, Avadel Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda et Zevra Therapeutics.<\/p>

Comment rester inform\u00e9 et s'impliquer<\/b><\/p>

Visiter\u00a0Illuminer l'hypersomnie<\/a>\u00a0et compl\u00e9ter le\u00a0formulaire de contact<\/a>\u00a0pour recevoir des mises \u00e0 jour sur le lancement de l'enqu\u00eate, l'inscription \u00e0 la r\u00e9union et d'autres possibilit\u00e9s de participer et de faire passer le message.<\/p>

\u00c0 propos du PFDD et de l'initiative Illuminate Hypersomnia<\/b><\/p>

L'initiative Patient-Focused Drug Development (PFDD), lanc\u00e9e par la FDA am\u00e9ricaine en 2013, a contribu\u00e9 \u00e0 une compr\u00e9hension globale de l'exp\u00e9rience v\u00e9cue de plus de 115 conditions m\u00e9dicales \u00e0 ce jour. En tant que r\u00e9union PFDD dirig\u00e9e de l'ext\u00e9rieur, la r\u00e9union du 11 avril 2024 offre aux patients de l'IH une occasion unique d'exprimer leurs exp\u00e9riences, leurs besoins et leurs priorit\u00e9s directement au personnel de la FDA, aux chercheurs et aux d\u00e9veloppeurs de th\u00e9rapies m\u00e9dicales.<\/p>

A propos du consortium du sommeil et de l'hypersomnie idiopathique<\/b><\/p>

Sleep Consortium est une organisation enregistr\u00e9e \u00e0 but non lucratif, 501(c)(3), cr\u00e9\u00e9e pour acc\u00e9l\u00e9rer la recherche de nouvelle g\u00e9n\u00e9ration, la compr\u00e9hension de la maladie et le d\u00e9veloppement de th\u00e9rapies pour ceux qui vivent avec des troubles centraux primaires et secondaires de l'hypersomnolence (CDoH) et des maladies connexes, dont l'hypersomnie idiopathique fait partie. L'hypersomnie idiopathique est une maladie neurologique chronique rare caract\u00e9ris\u00e9e par une somnolence diurne excessive (SDE ou hypersomnolence), une difficult\u00e9 extr\u00eame \u00e0 se r\u00e9veiller, un sommeil nocturne anormalement long, des siestes non r\u00e9paratrices et des sympt\u00f4mes autonomes et cognitifs. Pour plus d'informations, consultez le site\u00a0Consortium du sommeil - Hypersomnie idiopathique<\/a><\/p>

CONTACT M\u00c9DIA :
<\/b>Lindsay Jesteadt, PhD
Co-fondateur et PDG, Sleep Consortium
Courriel : 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":"

Sleep Consortium organise cette initiative historique en collaboration avec les organisations de d\u00e9fense des patients qui servent la communaut\u00e9 IH. Sleep Consortium a \u00e9t\u00e9 approuv\u00e9 par le...<\/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 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":[4],"tags":[],"class_list":["post-3834","post","type-post","status-publish","format-standard","hentry","category-news"],"yoast_head":"\nIlluminate Hypersomnia Initiative Shines Light on What It's Like to Live with Idiopathic Hypersomnia | Sleep Consortium<\/title>\n<meta name=\"robots\" content=\"noindex, follow\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Illuminate Hypersomnia Initiative Shines Light on What It's Like to Live with Idiopathic Hypersomnia | Sleep Consortium\" \/>\n<meta property=\"og:description\" content=\"Sleep Consortium is hosting this landmark initiative in collaboration with patient advocacy organizations that serve the IH community. 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