{"id":3158,"date":"2023-01-09T15:48:03","date_gmt":"2023-01-09T15:48:03","guid":{"rendered":"https:\/\/sleepconsort.wpengine.com\/?page_id=3158"},"modified":"2026-05-14T11:51:27","modified_gmt":"2026-05-14T15:51:27","slug":"dei-task-force","status":"publish","type":"page","link":"https:\/\/sleepconsortium.org\/pt\/dei-task-force\/","title":{"rendered":"Grupo de Trabalho DEI"},"content":{"rendered":"
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Grupo de Trabalho DEI<\/h1>\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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O Sleep Consortium compreende e abra\u00e7a a necessidade cr\u00edtica de abordar as defici\u00eancias do sono nas comunidades sub-representadas e nos indiv\u00edduos que apresentam sintomas de perturba\u00e7\u00f5es do sono. <\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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A abordagem dos determinantes sociais persistentes e sub-reconhecidos da sa\u00fade do sono, afectados pelo acesso aos cuidados de sa\u00fade, pelo n\u00edvel de educa\u00e7\u00e3o, pelo estatuto socioecon\u00f3mico, \u00e9tnico, racial, de g\u00e9nero e social, s\u00e3o mecanismos subjacentes que t\u00eam um impacto significativo nas popula\u00e7\u00f5es desfavorecidas da nossa comunidade. O combate a essas disparidades \u00e9 a lente atrav\u00e9s da qual lidamos com a discrimina\u00e7\u00e3o de indiv\u00edduos e fam\u00edlias mal servidos e vulner\u00e1veis.<\/p>

O nosso Grupo de Trabalho para a Disparidade tem como objetivo identificar as principais \u00e1reas de exclus\u00e3o que existem nas comunidades vulner\u00e1veis de doen\u00e7as\/transtornos do sono e, por isso, baseia-se em princ\u00edpios de inclus\u00e3o e equidade (acesso, direitos, oportunidades e elimina\u00e7\u00e3o da discrimina\u00e7\u00e3o). O Sleep Consortium criou um grupo de intervenientes-chave pr\u00e9-selecionados que vivem com uma perturba\u00e7\u00e3o do sono diagnosticada - como a Narcolepsia, a Hipers\u00f3nia Idiop\u00e1tica, a S\u00edndrome de Kleine Levin ou as Perturba\u00e7\u00f5es Parass\u00f3nias - e cuja experi\u00eancia pessoal e paix\u00e3o pelo progresso ajudam a impulsionar a agenda de investiga\u00e7\u00e3o e diagn\u00f3stico.<\/p>

O objetivo do f\u00f3rum DEI \u00e9 aumentar a aten\u00e7\u00e3o na identifica\u00e7\u00e3o dos obst\u00e1culos \u00e0 recolha de dados atrav\u00e9s de uma plataforma \u00fanica detida pelo doente, consentir em pr\u00e1ticas de partilha de dados e melhorar o acesso a ensaios cl\u00ednicos em todas as comunidades.<\/p>

Acreditamos firmemente que \u00e9 atrav\u00e9s da partilha da experi\u00eancia e da voz dos doentes que as barreiras educativas s\u00e3o quebradas e que as ideias para a colabora\u00e7\u00e3o global surgem, independentemente da geografia, dos factores ambientais, das influ\u00eancias culturais e dos contextos sociais ou \u00e9tnicos.<\/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

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Membros do Grupo de Trabalho DEI<\/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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Lauryn Craine<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Lauryn Craine \u00e9 rec\u00e9m-formada pela faculdade de Missouri Valley. Licenciou-se em Ingl\u00eas. Escreve por divers\u00e3o e como carreira. A sua escrita centra-se na cultura pop, na defici\u00eancia e em conte\u00fados acad\u00e9micos.<\/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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Lauryn Craine \u00e9 rec\u00e9m-formada pela faculdade de Missouri Valley. Licenciou-se em Ingl\u00eas. Escreve por divers\u00e3o e como carreira. A sua escrita centra-se na cultura pop, na defici\u00eancia e em conte\u00fados acad\u00e9micos.<\/p>\n

O trabalho de Lauryn na defesa das pessoas com defici\u00eancia resulta do facto de lhe ter sido diagnosticada Hipersonol\u00eancia Idiop\u00e1tica (HI). Decidiu que queria sensibilizar para a sua doen\u00e7a e para a doen\u00e7a irm\u00e3 da IH, a Narcolepsia, atrav\u00e9s da escrita. Fora da advocacia, Lauryn adora jogar videojogos, ler uma variedade de livros e colecionar peluches para guardar no seu quarto.<\/p>\n<\/div>\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n\n\t\t

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Andr\u00e9 Royal<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Andre Royal \"Sr.\" \u00e9 um escritor ativo, fotojornalista, bloguista e defensor da comunidade, com \u00eanfase no planeamento de eventos centrados na fam\u00edlia e em aplica\u00e7\u00f5es de artes visuais.<\/p>

Atualmente localizado nos Estados Unidos e a residir em Eugene, Oregon.<\/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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Andre Royal \"Sr.\" \u00e9 um escritor ativo, fotojornalista, bloguista e defensor da comunidade, com \u00eanfase no planeamento de eventos centrados na fam\u00edlia e em aplica\u00e7\u00f5es de artes visuais.<\/p>\n

Atualmente localizado nos Estados Unidos e a residir em Eugene, Oregon.<\/p>\n

Andre Royal \u00e9 o fundador do Suddenlysleepy.org, do Suddenly Sleepy Sleepwalk 5K e autor da s\u00e9rie de livros infantis vencedora de v\u00e1rios pr\u00e9mios Platinum em:<\/p>\n

Chefandreroyal.com (Chef Andre Royal LLC).<\/p>\n

Andre Royal, Sr. pode ser encontrado a trabalhar como Chefe de Cozinha Privado.<\/p>\n

Apaixonado pela soberania alimentar, acesso e equidade nutricional. O \"Chef Andr\u00e9 Royal\" tem forma\u00e7\u00e3o em Aprendizagem Experiencial e desenvolve agora um curr\u00edculo que destaca os princ\u00edpios S.T.E.M. e S.T.E.A.M. aplicados nas \u00e1reas da literacia financeira, explora\u00e7\u00e3o cultural e procura de aventuras culin\u00e1rias.\u00a0<\/p>\n

Al\u00e9m disso, Andre Royal Sr. \u00e9 o gestor principal do projeto de I&D de uma empresa de jogos emergente que se centra na sa\u00fade, no bem-estar e na higiene do sono.<\/p>\n

Andre Royal Sr. \u00e9 um experiente Navegador Vocacional e atualmente \u00e9 o Consultor de Vendas e Marketing de uma empresa de desenvolvimento Web sediada em Eugene, Oregon, que supervisiona atualmente: Cria\u00e7\u00e3o de conte\u00fados, Tutoriais e Desenvolvimento de Coortes, combinando a experi\u00eancia do Programa de Belas Artes e Culin\u00e1ria em \"Aplica\u00e7\u00f5es de Design Respons\u00e1veis e Focadas na Tecnologia para futuras Solu\u00e7\u00f5es de Parceria de For\u00e7a de Trabalho.<\/p>\n

O Chef Andr\u00e9 Royal \u00e9 um sobrevivente da Acalasia e um defensor de v\u00e1rias doen\u00e7as raras e da sa\u00fade e bem-estar (para crian\u00e7as e adultos de diferentes capacidades e n\u00edveis de cogni\u00e7\u00e3o).<\/p>\n

Andre Royal Sr. \u00e9 um consultor ativo em Narcolepsia e Dist\u00farbios do Sono, com experi\u00eancia de vida aplicada em D.E.I., que est\u00e1 frequentemente dispon\u00edvel para iniciativas de marketing p\u00fablico\/privado e desenvolvimento de rela\u00e7\u00f5es p\u00fablicas, ou seja, envolvimento da comunidade.<\/p>\n<\/div>\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n\n\t\t

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Fel\u00edcia Elisabeth<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Felicia Elisabeth \u00e9 uma estudante e ativista da Indon\u00e9sia. Atualmente, vive na Tail\u00e2ndia para fazer um mestrado em Ci\u00eancia Alimentar para a Nutri\u00e7\u00e3o na Universidade de Mahidol. Foi-lhe diagnosticada Narcolepsia Tipo 1 em 2021, depois de ter desenvolvido os sintomas durante quase dez anos.<\/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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Felicia Elisabeth \u00e9 uma estudante e ativista da Indon\u00e9sia. Atualmente, vive na Tail\u00e2ndia para fazer um mestrado em Ci\u00eancia Alimentar para a Nutri\u00e7\u00e3o na Universidade de Mahidol. Foi diagnosticada com Narcolepsia Tipo 1 em 2021, depois de quase dez anos a desenvolver os sintomas. A sua jornada para o diagn\u00f3stico come\u00e7ou em 2017, quando foi diagnosticada erradamente com ins\u00f3nia e epilepsia. Em 2022, ela se juntou ao programa Rising Voices for Narcolepsy do Project Sleep para aumentar a conscientiza\u00e7\u00e3o sobre os dist\u00farbios do sono. Agora, sua miss\u00e3o \u00e9 reduzir os estigmas sobre a narcolepsia na Indon\u00e9sia.\u00a0<\/p>\n<\/div>\n<\/div>\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n\n\t\t

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Tatiana Maria Corbitt<\/h3>\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\t\t\t\tTatiana Maria Corbitt \u00e9 uma licenciada de primeira gera\u00e7\u00e3o. Obteve o seu Mestrado em Ci\u00eancias Biol\u00f3gicas Aplicadas na Universidade do Estado do Arizona, onde tamb\u00e9m publicou a sua tese de licenciatura Barrett, a tese do Honors College que investigava a investiga\u00e7\u00e3o e a regulamenta\u00e7\u00e3o da FAA relativamente a pilotos diab\u00e9ticos tratados com insulina.\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Tatiana Maria Corbitt \u00e9 uma licenciada de primeira gera\u00e7\u00e3o. Obteve o seu Mestrado em Ci\u00eancias Biol\u00f3gicas Aplicadas na Universidade do Estado do Arizona, onde tamb\u00e9m publicou a sua tese de licenciatura Barrett, a tese do Honors College que investigava a investiga\u00e7\u00e3o e a regulamenta\u00e7\u00e3o da FAA sobre pilotos diab\u00e9ticos tratados com insulina. Ela tem o prazer de informar que, um ano ap\u00f3s a publica\u00e7\u00e3o da sua tese, a FAA suspendeu os seus regulamentos injustificados sobre pilotos diab\u00e9ticos tratados com insulina. Continua a ser apaixonada pela utiliza\u00e7\u00e3o da ci\u00eancia na defesa da igualdade de direitos.\u00a0<\/p>\n

Tatiana come\u00e7ou a sentir sintomas graves de Narcolepsia Tipo 1 no primeiro ano da faculdade. Conseguiu formar-se, mas n\u00e3o p\u00f4de continuar a seguir a carreira m\u00e9dica ou cient\u00edfica devido \u00e0 gravidade dos sintomas. Isto aconteceu apesar de ter tentado uma s\u00e9rie de tratamentos e op\u00e7\u00f5es de adapta\u00e7\u00e3o ao local de trabalho. Ela esfor\u00e7a-se por ser transparente nas suas lutas para reduzir a vergonha que as pessoas com Narcolepsia podem sentir devido \u00e0s suas limita\u00e7\u00f5es.<\/p>\n

Atualmente, Tatiana \u00e9 artista e escritora. Escreve regularmente artigos para o site narcolepsy.sleep-disorders.net, e est\u00e1 atualmente a trabalhar no seu primeiro romance centrado numa pessoa com narcolepsia. Encontra frequentemente consolo nas \u00e1rvores do belo Noroeste do Pac\u00edfico, a que atualmente chama \"casa\".<\/p>\n<\/div>\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n\n\t\t

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Taylor Dillon<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t
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Taylor Dillon \u00e9 uma escritora cient\u00edfica filipina-americana que adora dan\u00e7ar e fazer todo-o-terreno. Foi-lhe diagnosticada narcolepsia aos 18 anos, depois do seu primeiro ano na Universidade de Miami. Enquanto estudante, efectuou investiga\u00e7\u00e3o sobre microbiologia marinha e ciclo biogeoqu\u00edmico global.<\/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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Taylor Dillon \u00e9 uma escritora cient\u00edfica filipina-americana que adora dan\u00e7ar e fazer todo-o-terreno. Foi-lhe diagnosticada narcolepsia aos 18 anos, depois do seu primeiro ano na Universidade de Miami. Enquanto estudante, efectuou investiga\u00e7\u00e3o sobre microbiologia marinha e ciclo biogeoqu\u00edmico global. Mas depois de aprender sobre a hipersonol\u00eancia, os seus interesses cient\u00edficos mudaram para incluir a neurofisiologia e a hist\u00f3ria evolutiva do sono.<\/p>\n

Taylor espera aumentar o acesso a informa\u00e7\u00f5es \u00fateis a fim de diminuir o estigma e a confus\u00e3o em torno da narcolepsia e da hipersonia idiop\u00e1tica. Desde o in\u00edcio de 2021, ela tem trabalhado com o Project Sleep para criar o Narcolepsy Nerd Alert Toolkits - uma biblioteca gratuita de recursos detalhados. E ela est\u00e1 animada e honrada por fazer parte do Painel DEI inaugural do Sleep Consortium.<\/p>\n<\/div>\t\t\t<\/div>\n\t\t<\/div>\n\t<\/div>\n\n\t\t

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\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t\"harmony\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
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DEI Task Force Sleep Consortium understands and embraces the critical need for addressing sleep deficiencies in under-represented communities and individuals experiencing symptoms of disordered sleep. Addressing persistent under-recognized social determinants of sleep health impacted by access to health care, educational background, socio-economic, ethnic, racial, gender, and social status are underlying mechanisms that significantly impact disadvantaged […]<\/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":"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":"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":"default","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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