{"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\/pt\/news\/sleep-consortium-announces-the-illuminate-hypersomnia-adjunct-scientific-meeting-to-tackle-drug-development-challenges-for-idiopathic-hypersomnia\/","title":{"rendered":"O Sleep Consortium anuncia a Reuni\u00e3o Cient\u00edfica Adjunta Illuminate Hypersomnia para enfrentar os desafios do desenvolvimento de medicamentos para a hipers\u00f3nia idiop\u00e1tica"},"content":{"rendered":"

West Palm Beach, FL - 26 de novembro de 2024 - O Sleep Consortium, em colabora\u00e7\u00e3o com uma coaliz\u00e3o de organiza\u00e7\u00f5es parceiras e patrocinadores, tem o prazer de anunciar o Illuminate Hypersomnia Adjunct Scientific Meeting, agendado para 13 de fevereiro de 2025, das 12:00 \u00e0s 14:00 EST. Esta sess\u00e3o cient\u00edfica virtual visa abordar desafios cr\u00edticos no desenvolvimento de medicamentos para hipersonia idiop\u00e1tica (IH), conforme identificado durante a inovadora reuni\u00e3o Illuminate Hypersomnia Externally-Led Patient-Focused Drug Development (EL-PFDD) realizada em 11 de abril de 2024.<\/p>\n\n\n\n

A Reuni\u00e3o Cient\u00edfica Adjunta Illuminate Hypersomnia reunir\u00e1 especialistas nas \u00e1reas da medicina do sono, investiga\u00e7\u00e3o farmac\u00eautica, ci\u00eancia regulamentar, assuntos m\u00e9dicos e defesa dos doentes. O foco ser\u00e1 nos esfor\u00e7os de colabora\u00e7\u00e3o para ultrapassar os principais obst\u00e1culos no desenvolvimento de tratamentos eficazes para a HI, uma doen\u00e7a neurol\u00f3gica cr\u00f3nica rara caracterizada por sonol\u00eancia diurna excessiva (EDS, ou hipersonol\u00eancia), dificuldade extrema em acordar, sono noturno anormalmente longo, sestas n\u00e3o repousantes e sintomas auton\u00f3micos e cognitivos.  <\/p>\n\n\n\n

Os t\u00f3picos das reuni\u00f5es s\u00e3o retirados diretamente do livro Illuminate Hypersomnia Relat\u00f3rio sobre a Voz do Doente,<\/a> com base em extensas reac\u00e7\u00f5es recolhidas na reuni\u00e3o do EL-PFDD e num inqu\u00e9rito pormenorizado que obteve 811 respostas de pessoas residentes em 21 pa\u00edses. Registo<\/a> para a reuni\u00e3o cient\u00edfica j\u00e1 est\u00e1 aberta a todos, e a agenda<\/a> apresenta os principais especialistas mundiais neste dom\u00ednio. <\/p>\n\n\n\n

As principais \u00e1reas de discuss\u00e3o incluem:<\/p>\n\n\n\n

- Exame atento do \"nevoeiro cerebral\", um sintoma incapacitante da IH que persiste para al\u00e9m da transi\u00e7\u00e3o do sono para o estado de alerta (in\u00e9rcia do sono)<\/p>\n\n\n\n

- Defini\u00e7\u00e3o de abordagens para melhor definir e medir o nevoeiro cerebral em estudos IH e ensaios cl\u00ednicos<\/p>\n\n\n\n

- An\u00e1lise dos obst\u00e1culos \u00e0 participa\u00e7\u00e3o em estudos de investiga\u00e7\u00e3o do IH <\/p>\n\n\n\n

- Gera\u00e7\u00e3o de considera\u00e7\u00f5es para recrutar e manter pessoas com IH em estudos de investiga\u00e7\u00e3o<\/p>\n\n\n\n

- Discuss\u00e3o de abordagens para dar resposta a necessidades n\u00e3o satisfeitas para fazer avan\u00e7ar o campo e melhorar os resultados para os doentes<\/p>\n\n\n\n

\"A reuni\u00e3o e o inqu\u00e9rito do EL-PFDD de abril de 2024 atra\u00edram centenas de pessoas com HI, prestadores de cuidados e defensores para partilharem as suas experi\u00eancias, prioridades de tratamento e necessidades m\u00e9dicas n\u00e3o satisfeitas na comunidade da HI. Os seus testemunhos sublinharam a necessidade urgente de investiga\u00e7\u00e3o e inova\u00e7\u00e3o aceleradas para trazer novas terapias para o mercado\", disse a co-fundadora e CEO do Sleep Consortium, Lindsay Jesteadt. \"O nosso objetivo com esta reuni\u00e3o adjunta \u00e9 aproveitar o impulso desse evento e reunir a comunidade cient\u00edfica para se concentrar na tradu\u00e7\u00e3o das perspectivas dos doentes em avan\u00e7os tang\u00edveis no desenvolvimento de medicamentos e cuidados.\"<\/p>\n\n\n\n

Os parceiros da Alian\u00e7a que ajudaram a lan\u00e7ar a iniciativa Illuminate Hypersomnia s\u00e3o: 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 e PWN4PWN. O Sleep Consortium est\u00e1 grato \u00e0s empresas que concederam subs\u00eddios educacionais sem restri\u00e7\u00f5es para apoiar a Reuni\u00e3o Cient\u00edfica Adjunta, para al\u00e9m da iniciativa mais alargada Illuminate Hypersomnia: Alkermes, Avadel Pharmaceuticals, Centessa Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda e Zevra Therapeutics.<\/p>\n\n\n\n

**Registo e informa\u00e7\u00f5es adicionais:**  <\/p>\n\n\n\n

A Reuni\u00e3o Cient\u00edfica Adjunta Illuminate Hypersomnia ser\u00e1 realizada virtualmente, oferecendo a pessoas de todo o mundo a oportunidade de participar gratuitamente a partir da comodidade dos seus escrit\u00f3rios ou casas. Para mais informa\u00e7\u00f5es e para se registar, visite sleepconsortium.org\/IH-ASM\/ <\/p>\n\n\n\n

**Sobre o Cons\u00f3rcio do Sono  <\/p>\n\n\n\n

O Cons\u00f3rcio do Sono \u00e9 uma organiza\u00e7\u00e3o sem fins lucrativos registada que se dedica a promover a investiga\u00e7\u00e3o, a compreens\u00e3o e o tratamento das perturba\u00e7\u00f5es centrais da hipersonol\u00eancia, incluindo a hipersonia idiop\u00e1tica. Atrav\u00e9s de esfor\u00e7os de colabora\u00e7\u00e3o e investiga\u00e7\u00e3o inovadora, o Cons\u00f3rcio visa melhorar a vida das pessoas afectadas por estas doen\u00e7as raras e dif\u00edceis.<\/p>\n\n\n\n

**CONTACTO COM OS MEIOS DE COMUNICA\u00c7\u00c3O SOCIAL:**<\/p>\n\n\n\n

Lindsay Jesteadt, PhD
Cofundador e Diretor Executivo, Sleep Consortium
Correio eletr\u00f3nico: PFDD@sleepconsortium.org<\/a>
S\u00edtio Web: www.sleepconsortium.org<\/a><\/p>\n\n\n\n

### ###<\/p>","protected":false},"excerpt":{"rendered":"

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 […]<\/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":"\nSleep 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=\"pt_PT\" \/>\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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