{"id":10,"date":"2024-11-26T09:00:00","date_gmt":"2024-11-26T14:00:00","guid":{"rendered":"https:\/\/sleepconsort.wpengine.com\/?page_id=10"},"modified":"2025-04-24T14:24:03","modified_gmt":"2025-04-24T18:24:03","slug":"home","status":"publish","type":"page","link":"https:\/\/sleepconsortium.org\/pt\/","title":{"rendered":"In\u00edcio"},"content":{"rendered":"
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Acelerar a investiga\u00e7\u00e3o e a terap\u00eautica a n\u00edvel mundial no dom\u00ednio das perturba\u00e7\u00f5es centrais da hipersonol\u00eancia e doen\u00e7as relacionadas<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\tAcesso ao Portal DREAMS <\/i><\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\n\t\t\t\t\tA espera acabou e o Portal est\u00e1 agora em direto! <\/span>\n\t\t\t\t<\/span>\n\t\t\t\t<\/h2>\n\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
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Portal de recolha de dados sobre o sono<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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A espera acabou! O nosso portal j\u00e1 est\u00e1 ativo. Clique no bot\u00e3o abaixo para iniciar sess\u00e3o.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\tAcesso ao portal<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\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
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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\tVer festa de lan\u00e7amento<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\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\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n\n\t\t
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Sobre o Sleep Consortium<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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O Sleep Consortium \u00e9 uma organiza\u00e7\u00e3o registada sem fins lucrativos (501(c)(3)) criada para acelerar a investiga\u00e7\u00e3o da pr\u00f3xima gera\u00e7\u00e3o, a compreens\u00e3o da doen\u00e7a e o desenvolvimento de terapias para as pessoas que vivem com Dist\u00farbios Centrais de Hipersonol\u00eancia (CDoH) e doen\u00e7as relacionadas.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\u00daltimas not\u00edcias<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Resumo da Reuni\u00e3o Cient\u00edfica Adjunta do Illuminate Hypersomnia<\/a><\/h3>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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24 de abril de 2025<\/b><\/span><\/p>

No dia 11 de abril de 2024, o Sleep Consortium organizou a reuni\u00e3o Illuminate Hypersomnia Externally Led Patient Focused Drug Development (EL-PFDD), um resumo da reuni\u00e3o j\u00e1 est\u00e1 dispon\u00edvel.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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O Cons\u00f3rcio<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Doentes e prestadores de cuidados<\/a><\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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A partilha de informa\u00e7\u00f5es pertencentes aos doentes, participando no programa de recolha de dados sobre o sono, \u00e9 uma das coisas mais importantes que pode fazer para marcar a diferen\u00e7a.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\tSaiba mais <\/i><\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\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\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\"connect\t\t\t\t\t\t\t\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
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Investigadores e ind\u00fastria<\/a><\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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O principal desafio que influencia a velocidade e a produtividade da inova\u00e7\u00e3o nas doen\u00e7as raras \u00e9 o custo e a falta de acesso fi\u00e1vel ou aberto a dados completos sobre os doentes.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\tSaiba mais <\/i><\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\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\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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Diretrizes para os doentes<\/a><\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Como viver com uma perturba\u00e7\u00e3o do sono<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\tSaiba mais <\/i><\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\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\t<\/div>\n\t\t<\/div>\n\t\t\t\t
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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\"ai\t\t\t\t\t\t\t\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
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Iluminar a hipers\u00f3nia<\/a><\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Desenvolvimento de medicamentos centrado no doente<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t

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\n\t\t\t\t\t\n\t\t\t\t\t\t\n\t\t\t\t\t\t\t\t\tSaiba mais <\/i><\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\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\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\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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\n\t\t\t\t\t\tO cons\u00f3rcio do sono adopta uma abordagem nova e arrojada \u00e0 investiga\u00e7\u00e3o do sono, colocando o doente no centro dos seus esfor\u00e7os. Esta iniciativa exige que o doente seja o impulsionador de novas considera\u00e7\u00f5es de investiga\u00e7\u00e3o, que se aproprie dos seus pr\u00f3prios dados e que seja um parceiro inestim\u00e1vel para os investigadores a n\u00edvel internacional. \t\t\t\t\t<\/div>\n\t\t\t\t\tAnne Marie Morse, Diretora de Neurologia Infantil e Medicina Pedi\u00e1trica do Sono, Geisinger, Janet Weis Children's Hospital<\/span><\/cite>\t\t\t\t<\/div>\n\t\t\t\t\t\t
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\n\t\t\t\t\t\t\"anne\n\t\t\t\t\t\t\t\t\t\t\t\t\t
<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t
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\n\t\t\t\t\t\tDesvendar os mist\u00e9rios da narcolepsia e acelerar a investiga\u00e7\u00e3o transformacional vai exigir tecnologia sofisticada e o bom e velho trabalho de equipa. \u00c9 por isso que acredito que a nova plataforma de recolha de dados dos doentes do Sleep Consortium est\u00e1 preparada para se tornar um motor essencial para a aprendizagem, os avan\u00e7os e o progresso centrado no doente, a fim de melhorar in\u00fameras vidas.\t\t\t\t\t<\/div>\n\t\t\t\t\tJulie Flygare, Presidente e Diretora Executiva do Projeto Sleep<\/span><\/cite>\t\t\t\t<\/div>\n\t\t\t\t\t\t
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<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t
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\n\t\t\t\t\t\tEsta iniciativa vai al\u00e9m da simples abordagem de reposit\u00f3rio de dados para criar uma plataforma de inova\u00e7\u00e3o, colabora\u00e7\u00e3o e envolvimento dos doentes diferente de tudo o resto. Trata-se de uma abordagem do s\u00e9culo XXI a uma quest\u00e3o que afecta um vasto leque de pessoas de formas muito profundas.\t\t\t\t\t<\/div>\n\t\t\t\t\tMichael Grandner, Diretor, Programa de Investiga\u00e7\u00e3o sobre Sono e Sa\u00fade, Universidade do Arizona<\/span><\/cite>\t\t\t\t<\/div>\n\t\t\t\t\t\t
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\n\t\t\t\t\t\t\"michael\n\t\t\t\t\t\t\t\t\t\t\t\t\t
<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t
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\n\t\t\t\t\t\tA vis\u00e3o do Sleep Consortium de uma colabora\u00e7\u00e3o pr\u00e9-competitiva de partilha de dados \u00e9 inovadora. O RARE-X tem a honra de apoiar esse pensamento progressista, que realmente acelerar\u00e1 nossa compreens\u00e3o dos dist\u00farbios do sono, bem como o desenvolvimento de terapias. O RARE-X orgulha-se de colaborar com o Sleep Consortium para criar uma arquitetura fundamental para a recolha de dados no espa\u00e7o do sono.\t\t\t\t\t<\/div>\n\t\t\t\t\tCharlene Son Rigby, Diretora Executiva da RARE-X<\/span><\/cite>\t\t\t\t<\/div>\n\t\t\t\t\t\t
\n\t\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\t\"Charlene\n\t\t\t\t\t\t\t\t\t\t\t\t\t
<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t
\n\t\t\t\t\t\t\t<\/i>\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t
\n\t\t\t\t\t\t\t<\/i>\t\t\t\t\t\t<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t
<\/div>\n\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\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":"

Accelerating Global Research and Therapeutics in Central Disorders of Hypersomnolence and Related Diseases DREAMS Portal Login The wait is over and the Portal is now live! Sleep Data Collection Portal The wait is over! Our portal is now live.\u00a0 Please click the button below to login. Portal Login View Launch Party About Sleep Consortium Sleep […]<\/p>\n","protected":false},"author":1,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"inline_featured_image":false,"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"full-width-container","site-content-style":"unboxed","site-sidebar-style":"unboxed","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":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","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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