{"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\/pt\/news\/illuminate-hypersomnia-initiative-shines-light\/","title":{"rendered":"A iniciativa \"Illuminate Hypersomnia\" esclarece o que \u00e9 viver com hipers\u00f3nia idiop\u00e1tica"},"content":{"rendered":"
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A iniciativa Illuminate Hypersomnia esclarece o que \u00e9 viver com hipers\u00f3nia 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
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A comunidade global une-se para iluminar os desafios e as aspira\u00e7\u00f5es de tratamento das pessoas que vivem com hipers\u00f3nia idiop\u00e1tica<\/i><\/p>

WEST PALM BEACH, Fl\u00f3rida, 7 de dezembro de 2023 \/PRNewswire\/ - O Sleep Consortium, em colabora\u00e7\u00e3o com organiza\u00e7\u00f5es de defesa de pacientes relacionados ao sono em todo o mundo, anuncia a iniciativa Illuminate Hypersomnia, um esfor\u00e7o inovador para destacar a experi\u00eancia vivida da hipersonia idiop\u00e1tica (HI). Esta iniciativa visa descrever completamente o impacto da HI na vida das pessoas afectadas, as suas estrat\u00e9gias de gest\u00e3o actuais e os benef\u00edcios do tratamento que mais lhes interessam \u00e0 medida que s\u00e3o desenvolvidas novas terapias.<\/p>

\"save<\/a>No dia 11 de abril de 2024, das 12:00 \u00e0s 16:00 (ET), a iniciativa Illuminate Hypersomnia ser\u00e1 a anfitri\u00e3 de uma reuni\u00e3o virtual de desenvolvimento de medicamentos com foco no paciente (PFDD), conduzida como um esfor\u00e7o paralelo \u00e0 iniciativa PFDD da Food and Drug Administration dos EUA. A reuni\u00e3o ser\u00e1 transmitida em direto, reunindo membros da comunidade global da IH para partilharem as suas experi\u00eancias e perspectivas. Al\u00e9m disso, ser\u00e1 realizado um inqu\u00e9rito PFDD no in\u00edcio de 2024 para garantir uma compreens\u00e3o abrangente dos desafios enfrentados pelo maior n\u00famero poss\u00edvel de pessoas com HI. Um relat\u00f3rio \"Voice of the Patient\" (Voz do Paciente) resumir\u00e1 os conhecimentos recolhidos na reuni\u00e3o e no inqu\u00e9rito do PFDD, criando um recurso inestim\u00e1vel para investigadores, patrocinadores do desenvolvimento de medicamentos, reguladores, profissionais de sa\u00fade e outros.<\/p>

A iniciativa Illuminate Hypersomnia tamb\u00e9m tem como objetivo expandir a colabora\u00e7\u00e3o e o apoio no seio da comunidade da IH para ajudar os indiv\u00edduos a aprenderem uns com os outros e a capacitarem-se mutuamente. As organiza\u00e7\u00f5es parceiras incluem: 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 e PWN4PWN.<\/p>

As primeiras not\u00edcias sobre a iniciativa suscitaram o interesse de todo o mundo, validando a necessidade desta iniciativa. Uma mulher que vive em Queensland, na Austr\u00e1lia, escreve: \"D\u00e9cadas de atraso no diagn\u00f3stico e a falta de op\u00e7\u00f5es de tratamento eficazes significam uma enorme perda de potencial humano. Estou de luto pelo que a minha vida poderia ter sido\". Do Texas rural, uma mulher escreve: \"H\u00e1 mais de 20 anos que luto contra a HI. Nenhum medicamento funciona sempre. Detesto a forma como a medica\u00e7\u00e3o me faz sentir. Anseio por um tratamento que me ajude a ter mais energia e melhor concentra\u00e7\u00e3o.\" Este pedido esperan\u00e7oso de uma pessoa de Ont\u00e1rio, no Canad\u00e1, faz eco de muitos outros recebidos: \"Quero melhores op\u00e7\u00f5es de tratamento para me ajudar a mim e a outras pessoas que vivem com HI a ter uma vida normal!\"<\/p>

\"A nossa miss\u00e3o com a iniciativa Illuminate Hypersomnia \u00e9 clara: trazer \u00e0 luz as lutas ocultas da hipers\u00f3nia idiop\u00e1tica e unirmo-nos na procura de melhores tratamentos\", comentou a CEO do Sleep Consortium, Lindsay Jesteadt, PhD. \"Estamos totalmente empenhados em capacitar a comunidade da IH, promover a colabora\u00e7\u00e3o e impulsionar a inova\u00e7\u00e3o para um futuro em que as pessoas afectadas possam experimentar toda a vitalidade da vida sem o peso da fadiga constante.\"<\/p>

As organiza\u00e7\u00f5es que apoiam generosamente a iniciativa Illuminate Hypersomnia com subs\u00eddios educacionais sem restri\u00e7\u00f5es incluem a Alkermes, a Avadel Pharmaceuticals, a Harmony Biosciences, a Jazz Pharmaceuticals, a Takeda e a Zevra Therapeutics.<\/p>

Como manter-se informado e participar<\/b><\/p>

Visitar\u00a0Iluminar a hipers\u00f3nia<\/a>\u00a0e completar o\u00a0formul\u00e1rio de contacto<\/a>\u00a0para receber actualiza\u00e7\u00f5es oportunas sobre o lan\u00e7amento do inqu\u00e9rito, a inscri\u00e7\u00e3o na reuni\u00e3o e outras oportunidades de participa\u00e7\u00e3o e divulga\u00e7\u00e3o.<\/p>

Sobre a PFDD e a Iniciativa Illuminate Hypersomnia<\/b><\/p>

A iniciativa Patient-Focused Drug Development (PFDD), iniciada pela FDA dos EUA em 2013, tem sido fundamental para fornecer uma compreens\u00e3o abrangente da experi\u00eancia vivida de mais de 115 condi\u00e7\u00f5es m\u00e9dicas at\u00e9 \u00e0 data. Como uma reuni\u00e3o de PFDD conduzida externamente, a reuni\u00e3o de 11 de abril de 2024 oferece aos pacientes da IH uma oportunidade \u00fanica de expressar suas experi\u00eancias, necessidades e prioridades diretamente aos funcion\u00e1rios da FDA, pesquisadores e desenvolvedores de terapias m\u00e9dicas.<\/p>

Sobre o Cons\u00f3rcio do Sono e a Hipers\u00f3nia Idiop\u00e1tica<\/b><\/p>

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) prim\u00e1rios e secund\u00e1rios e doen\u00e7as relacionadas, entre as quais a hipersonia idiop\u00e1tica. A HI \u00e9 uma doen\u00e7a neurol\u00f3gica cr\u00f3nica rara caracterizada por sonol\u00eancia diurna excessiva (SDE, ou hipersonol\u00eancia), dificuldade extrema em acordar, sono noturno anormalmente longo, sestas n\u00e3o reparadoras e sintomas auton\u00f3micos e cognitivos. Para mais informa\u00e7\u00f5es, visite\u00a0Sleep Consortium - Hipers\u00f3nia idiop\u00e1tica<\/a><\/p>

CONTACTO COM OS MEIOS DE COMUNICA\u00c7\u00c3O SOCIAL:
<\/b>Lindsay Jesteadt, PhD
Cofundador e Diretor Executivo, Sleep Consortium
Correio eletr\u00f3nico: 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":"

O Sleep Consortium est\u00e1 a organizar esta iniciativa hist\u00f3rica em colabora\u00e7\u00e3o com organiza\u00e7\u00f5es de defesa dos doentes que servem a comunidade da IH. O Sleep Consortium foi aprovado pelo...<\/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=\"pt_PT\" \/>\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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