{"id":3961,"date":"2024-11-26T09:00:00","date_gmt":"2024-11-26T14:00:00","guid":{"rendered":"https:\/\/sleepconsortium.org\/?p=3961"},"modified":"2026-03-02T11:28:46","modified_gmt":"2026-03-02T16:28:46","slug":"sleep-consortium-announces-the-illuminate-hypersomnia-adjunct-scientific-meeting-to-tackle-drug-development-challenges-for-idiopathic-hypersomnia","status":"publish","type":"post","link":"https:\/\/sleepconsortium.org\/es\/news\/sleep-consortium-announces-the-illuminate-hypersomnia-adjunct-scientific-meeting-to-tackle-drug-development-challenges-for-idiopathic-hypersomnia\/","title":{"rendered":"El Consorcio del Sue\u00f1o anuncia la reuni\u00f3n cient\u00edfica adjunta Illuminate Hypersomnia para abordar los retos del desarrollo de f\u00e1rmacos para la hipersomnia idiop\u00e1tica"},"content":{"rendered":"<p>West Palm Beach, FL - 26 de noviembre de 2024 - El Consorcio del Sue\u00f1o, en colaboraci\u00f3n con una coalici\u00f3n de organizaciones asociadas y patrocinadores, se complace en anunciar la Reuni\u00f3n Cient\u00edfica Adjunta de Hipersomnia Illuminate, programada para el 13 de febrero de 2025, de 12:00 a 2:00 p.m. EST. Esta sesi\u00f3n cient\u00edfica virtual tiene como objetivo abordar los desaf\u00edos cr\u00edticos en el desarrollo de f\u00e1rmacos para la hipersomnia idiop\u00e1tica (IH), identificados durante la innovadora reuni\u00f3n Illuminate Hypersomnia Externally-Led Patient-Focused Drug Development (EL-PFDD) celebrada el 11 de abril de 2024.<\/p>\n\n\n\n<p>La Reuni\u00f3n Cient\u00edfica Adjunta sobre Hipersomnia Illuminate reunir\u00e1 a expertos en los campos de la medicina del sue\u00f1o, la investigaci\u00f3n farmac\u00e9utica, la ciencia reguladora, los asuntos m\u00e9dicos y la defensa del paciente. Se centrar\u00e1 en los esfuerzos de colaboraci\u00f3n para superar los obst\u00e1culos clave en el desarrollo de tratamientos eficaces para la IH, un trastorno neurol\u00f3gico cr\u00f3nico poco frecuente caracterizado por somnolencia diurna excesiva (EDS, o hipersomnolencia), dificultad extrema para despertarse, sue\u00f1o nocturno anormalmente largo, siestas no reparadoras y s\u00edntomas auton\u00f3micos y cognitivos. &nbsp;<\/p>\n\n\n\n<p>Los temas de las reuniones se extraen directamente de Ilumina la hipersomnia <a href=\"https:\/\/sleepconsortium.org\/es\/illuminate-hypersomnia\/\">Informe La Voz del Paciente,<\/a> bas\u00e1ndose en la amplia informaci\u00f3n recabada en la reuni\u00f3n de la EL-PFDD y en una encuesta detallada a la que respondieron 811 personas de 21 pa\u00edses. <a href=\"https:\/\/sleepconsortium.org\/es\/IH-ASM\/\">Inscripci\u00f3n<\/a> para la reuni\u00f3n cient\u00edfica ya est\u00e1 abierta a todos, y la <a href=\"https:\/\/sleepconsortium.org\/es\/IH-ASM\/\">agenda<\/a> cuenta con destacados expertos mundiales en la materia.&nbsp;<\/p>\n\n\n\n<p>Los principales temas de debate son:<\/p>\n\n\n\n<p>- Examen minucioso de la \"niebla cerebral\", un s\u00edntoma incapacitante del IH que persiste m\u00e1s all\u00e1 de la transici\u00f3n del sue\u00f1o al estado de alerta (inercia del sue\u00f1o).<\/p>\n\n\n\n<p>- Definici\u00f3n de enfoques para definir y medir mejor la niebla cerebral en estudios de IH y ensayos cl\u00ednicos.<\/p>\n\n\n\n<p>- Revisi\u00f3n de las barreras a la participaci\u00f3n en los estudios de investigaci\u00f3n de IH&nbsp;<\/p>\n\n\n\n<p>- Generaci\u00f3n de consideraciones para reclutar y retener a personas con DI en estudios de investigaci\u00f3n.<\/p>\n\n\n\n<p>- Debate sobre los enfoques para abordar las necesidades no satisfechas con el fin de avanzar en el campo y mejorar los resultados de los pacientes.<\/p>\n\n\n\n<p>\"La reuni\u00f3n y encuesta de la EL-PFDD 2024 de abril atrajo a cientos de personas con IH, cuidadores y defensores para compartir sus experiencias, prioridades de tratamiento y las necesidades m\u00e9dicas no cubiertas dentro de la comunidad de IH. Sus testimonios subrayaron la urgente necesidad de acelerar la investigaci\u00f3n y la innovaci\u00f3n para llevar nuevas terapias al mercado\", dijo Lindsay Jesteadt, cofundadora y CEO del Consorcio del Sue\u00f1o. \"Nuestro objetivo con esta reuni\u00f3n adjunta es aprovechar el impulso de ese evento y reunir a la comunidad cient\u00edfica para centrarse en traducir esas perspectivas de los pacientes en avances tangibles en el desarrollo de f\u00e1rmacos y la atenci\u00f3n.\"<\/p>\n\n\n\n<p>Los socios de la Alianza que ayudaron a lanzar la iniciativa Illuminate Hypersomnia son: 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, NapsForLife Ltd., Project Sleep, y PWN4PWN. El Consorcio del Sue\u00f1o agradece a las empresas que proporcionaron subvenciones educativas sin restricciones para apoyar la Reuni\u00f3n Cient\u00edfica Adjunta, adem\u00e1s de la iniciativa m\u00e1s amplia Illuminate Hypersomnia: Alkermes, Avadel Pharmaceuticals, Centessa Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda y Zevra Therapeutics.<\/p>\n\n\n\n<p>**Inscripci\u00f3n e informaci\u00f3n adicional &nbsp;<\/p>\n\n\n\n<p>La Reuni\u00f3n Cient\u00edfica Adjunta sobre Hipersomnia Illuminate se celebrar\u00e1 virtualmente, ofreciendo a personas de todo el mundo la oportunidad de participar gratuitamente desde la comodidad de sus oficinas u hogares. Para m\u00e1s detalles y para inscribirse, visite sleepconsortium.org\/IH-ASM\/.&nbsp;<\/p>\n\n\n\n<p>**Sobre el Consorcio del Sue\u00f1o:** &nbsp;<\/p>\n\n\n\n<p>El Consorcio del Sue\u00f1o es una organizaci\u00f3n registrada sin \u00e1nimo de lucro dedicada al avance de la investigaci\u00f3n, la comprensi\u00f3n y el tratamiento de los trastornos centrales de la hipersomnolencia, incluida la hipersomnia idiop\u00e1tica. Mediante esfuerzos de colaboraci\u00f3n e investigaci\u00f3n innovadora, el Consorcio pretende mejorar la vida de los afectados por estas enfermedades raras y dif\u00edciles.<\/p>\n\n\n\n<p>**CONTACTO CON LOS MEDIOS DE COMUNICACI\u00d3N<\/p>\n\n\n\n<p>Dra. Lindsay Jesteadt<br>Cofundadora y Directora General, Consorcio del Sue\u00f1o<br>Correo electr\u00f3nico: <a href=\"mailto:PFDD@sleepconsortium.org\">PFDD@sleepconsortium.org<\/a><br>P\u00e1gina web: <a href=\"https:\/\/sleepconsortium.org\/es\/\">www.sleepconsortium.org<\/a><\/p>\n\n\n\n<p>### ###<\/p>","protected":false},"excerpt":{"rendered":"<p>West Palm Beach, FL \u2014 November 26, 2024 \u2013 The Sleep Consortium, in collaboration with a coalition of partner organizations and sponsors, is pleased to announce the Illuminate Hypersomnia Adjunct Scientific Meeting, scheduled for February 13, 2025, from 12:00 \u2013 2:00 p.m. EST. This virtual scientific session aims to address critical challenges in drug development [&hellip;]<\/p>\n","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-3961","post","type-post","status-publish","format-standard","hentry","category-news"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.3 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Sleep Consortium Announces the Illuminate Hypersomnia Adjunct Scientific Meeting to Tackle Drug Development Challenges for Idiopathic Hypersomnia | Sleep Consortium<\/title>\n<meta name=\"robots\" content=\"noindex, follow\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Sleep Consortium Announces the Illuminate Hypersomnia Adjunct Scientific Meeting to Tackle Drug Development Challenges for Idiopathic Hypersomnia | Sleep Consortium\" \/>\n<meta property=\"og:description\" content=\"West Palm Beach, FL \u2014 November 26, 2024 \u2013 The Sleep Consortium, in collaboration with a coalition of partner organizations and sponsors, is pleased to announce the Illuminate Hypersomnia Adjunct Scientific Meeting, scheduled for February 13, 2025, from 12:00 \u2013 2:00 p.m. EST. 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