{"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\/es\/news\/illuminate-hypersomnia-initiative-shines-light\/","title":{"rendered":"La iniciativa \"Ilumina la hipersomnia\" arroja luz sobre c\u00f3mo es vivir con hipersomnia idiop\u00e1tica"},"content":{"rendered":"<div data-elementor-type=\"wp-post\" data-elementor-id=\"3834\" class=\"elementor elementor-3834\" 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\">La iniciativa \"Ilumina la hipersomnia\" arroja luz sobre c\u00f3mo es vivir con hipersomnia idiop\u00e1tica<\/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<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><i>La comunidad mundial se une para dar a conocer los retos y las aspiraciones de tratamiento de las personas que padecen hipersomnia idiop\u00e1tica<\/i><\/p><p>WEST PALM BEACH, Florida, 7 de diciembre de 2023 \/PRNewswire\/ - El Consorcio del Sue\u00f1o, en colaboraci\u00f3n con organizaciones de defensa de los pacientes relacionados con el sue\u00f1o de todo el mundo, anuncia la iniciativa Illuminate Hypersomnia (Ilumina la hipersomnia), un esfuerzo innovador para destacar la experiencia vivida de la hipersomnia idiop\u00e1tica (HII). El objetivo de esta iniciativa es describir el impacto de la hipersomnia idiop\u00e1tica en las vidas de los afectados, sus estrategias de tratamiento actuales y los beneficios que m\u00e1s les importan a medida que se desarrollan nuevas terapias.<\/p><p><a href=\"https:\/\/sleepconsortium.org\/es\/illuminate-hypersomnia\/\"><img fetchpriority=\"high\" decoding=\"async\" class=\"alignright\" src=\"https:\/\/sleepconsortium.org\/wp-content\/uploads\/2023\/12\/save-the-date.jpg\" alt=\"save the date\" width=\"400\" height=\"209\" \/><\/a>El 11 de abril de 2024, de 12:00 a 16:00 horas (ET), la iniciativa Illuminate Hypersomnia acoger\u00e1 una reuni\u00f3n virtual sobre el desarrollo de f\u00e1rmacos centrados en el paciente (PFDD), dirigida externamente, que se llevar\u00e1 a cabo como un esfuerzo paralelo a la iniciativa PFDD de la Administraci\u00f3n de Alimentos y Medicamentos de los Estados Unidos. La reuni\u00f3n se retransmitir\u00e1 en directo y reunir\u00e1 a miembros de la comunidad mundial de IH para que compartan sus experiencias y perspectivas. Adem\u00e1s, a principios de 2024 se llevar\u00e1 a cabo una encuesta sobre la PFDD para garantizar un conocimiento exhaustivo de los retos a los que se enfrenta el mayor n\u00famero posible de personas con HI. En un informe titulado \"La voz del paciente\" se resumir\u00e1n las ideas recogidas en la reuni\u00f3n y la encuesta de la PFDD, creando un recurso inestimable para investigadores, patrocinadores del desarrollo de f\u00e1rmacos, reguladores, profesionales sanitarios y otros.<\/p><p>La iniciativa Illuminate Hypersomnia tambi\u00e9n pretende ampliar la colaboraci\u00f3n y el apoyo dentro de la comunidad de hipersomnia para ayudar a las personas a aprender unas de otras y potenciarse mutuamente. Entre las organizaciones asociadas figuran: 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 y PWN4PWN.<\/p><p>Las primeras noticias sobre la iniciativa han generado inter\u00e9s en todo el mundo, validando la necesidad de esta iniciativa. Una mujer residente en Queensland (Australia) escribe: \"D\u00e9cadas de retraso en el diagn\u00f3stico y la falta de opciones de tratamiento eficaces suponen una enorme p\u00e9rdida de potencial humano. Lloro por lo que podr\u00eda haber sido mi vida\". Desde una zona rural de Texas, una mujer escribe: \"Llevo m\u00e1s de 20 a\u00f1os luchando contra el IH. Ning\u00fan medicamento funciona siempre. Odio c\u00f3mo me hacen sentir los medicamentos. Anhelo un tratamiento que me ayude a tener m\u00e1s energ\u00eda y mejor concentraci\u00f3n.\" Esta esperanzadora petici\u00f3n de una persona de Ontario, Canad\u00e1, se hace eco de muchas otras recibidas: \"\u00a1Quiero mejores opciones de tratamiento para ayudarme a m\u00ed y a otras personas que viven con IH a llevar una vida normal!\"<\/p><p>\"Nuestra misi\u00f3n con la iniciativa Illuminate Hypersomnia es clara: sacar a la luz las luchas ocultas de la hipersomnia idiop\u00e1tica y unirnos en la b\u00fasqueda de mejores tratamientos\", remarc\u00f3 la CEO de Sleep Consortium, Lindsay Jesteadt, PhD. \"Estamos plenamente comprometidos a empoderar a la comunidad de la IH, fomentar la colaboraci\u00f3n e impulsar la innovaci\u00f3n para un futuro en el que los afectados puedan experimentar toda la vitalidad de la vida sin el peso de la fatiga constante.\"<\/p><p>Entre las organizaciones que apoyan generosamente la iniciativa Illuminate Hypersomnia con subvenciones educativas sin restricciones se encuentran Alkermes, Avadel Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda y Zevra Therapeutics.<\/p><p><b>C\u00f3mo mantenerse informado y participar<\/b><\/p><p>Visite\u00a0<a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=4043060-1&amp;h=2915740012&amp;u=https%3A%2F%2Fsleepconsortium.org%2Filluminate-hypersomnia%2F&amp;a=Illuminate+Hypersomnia\" target=\"_blank\" rel=\"nofollow noopener\">Iluminar la hipersomnia<\/a>\u00a0y complete el\u00a0<a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=4043060-1&amp;h=3687302137&amp;u=https%3A%2F%2Fsleepconsortium.org%2Filluminate-hypersomnia%2Fform%2F&amp;a=contact+form\" target=\"_blank\" rel=\"nofollow noopener\">formulario de contacto<\/a>\u00a0para recibir informaci\u00f3n actualizada sobre el lanzamiento de la encuesta, la inscripci\u00f3n en la reuni\u00f3n y otras oportunidades de participar y difundir el mensaje.<\/p><p><b>Acerca de la PFDD y la Iniciativa Ilumina la Hipersomnia<\/b><\/p><p>La iniciativa de Desarrollo de Medicamentos Centrado en el Paciente (PFDD), iniciada por la FDA de EE.UU. en 2013, ha sido fundamental para proporcionar una comprensi\u00f3n global de la experiencia vivida de m\u00e1s de 115 condiciones m\u00e9dicas hasta la fecha. Como reuni\u00f3n PFDD dirigida externamente, la reuni\u00f3n del 11 de abril de 2024 ofrece a los pacientes de IH una oportunidad \u00fanica para expresar sus experiencias, necesidades y prioridades directamente al personal de la FDA, a los investigadores y a los desarrolladores de terapias m\u00e9dicas.<\/p><p><b>Acerca del Consorcio del Sue\u00f1o y la Hipersomnia Idiop\u00e1tica<\/b><\/p><p>El Consorcio del Sue\u00f1o es una organizaci\u00f3n registrada sin \u00e1nimo de lucro, 501(c)(3), creada para acelerar la investigaci\u00f3n de nueva generaci\u00f3n, la comprensi\u00f3n de la enfermedad y el desarrollo de terapias para quienes padecen Trastornos Centrales de Hipersomnolencia (TCIH) primarios y secundarios y enfermedades relacionadas, entre las que se encuentra la hipersomnia idiop\u00e1tica. La IH es 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. Para m\u00e1s informaci\u00f3n, visite\u00a0<a href=\"https:\/\/c212.net\/c\/link\/?t=0&amp;l=en&amp;o=4043060-1&amp;h=3261747572&amp;u=https%3A%2F%2Fsleepconsortium.org%2Fidiopathic-hypersomnia%2F&amp;a=Sleep+Consortium+%E2%80%93+Idiopathic+Hypersomnia\" target=\"_blank\" rel=\"nofollow noopener\">Consorcio del Sue\u00f1o - Hipersomnia Idiop\u00e1tica<\/a><\/p><p><b>CONTACTO CON LOS MEDIOS DE COMUNICACI\u00d3N:<br \/><\/b>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><\/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>Sleep Consortium organiza esta iniciativa hist\u00f3rica en colaboraci\u00f3n con organizaciones de defensa de los pacientes que sirven a la comunidad de IH. Sleep Consortium ha sido aprobado por la...<\/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":"<!-- This site is optimized with the Yoast SEO plugin v27.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Illuminate Hypersomnia Initiative Shines Light on What It&#039;s Like to Live with 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=\"Illuminate Hypersomnia Initiative Shines Light on What It&#039;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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