{"id":20127,"date":"2025-05-27T08:31:55","date_gmt":"2025-05-27T12:31:55","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?p=20127"},"modified":"2025-08-07T17:44:03","modified_gmt":"2025-08-07T21:44:03","slug":"rdd-2025-cimus","status":"publish","type":"post","link":"https:\/\/www.progeriaresearch.org\/pt\/2025\/05\/27\/rdd-2025-cimus\/","title":{"rendered":"Os cofundadores da PRF, Drs. Leslie Gordon e Scott Berns, falam como l\u00edderes de pensamento na CiMUS, Espanha"},"content":{"rendered":"

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O Centro de Pesquisa em Medicina Molecular e Doen\u00e7as Cr\u00f4nicas (CiMUS) da Universidade de Santiago, na Espanha, convidou os cofundadores da PRF para compartilhar suas hist\u00f3rias em um evento especial do Dia das Doen\u00e7as Raras de 2025.<\/p>\n

Organizado e moderado pelo pesquisador da PRF, Dr. Ricardo Villa-Bellosta, os Drs. Gordon e Berns compartilhar\u00e3o os \u00faltimos avan\u00e7os da pesquisa que impactam o campo da pesquisa da Progeria e a jornada de trazer a Progeria da obscuridade para a descoberta do gene, para o tratamento, para a conscientiza\u00e7\u00e3o global e uma poss\u00edvel cura no horizonte! Eles tamb\u00e9m foram acompanhados por Esther Martinez Gracia, m\u00e3e de Alexandra Perault e amiga e apoiadora de longa data da PRF.<\/p>\n

Para mais informa\u00e7\u00f5es sobre o evento, Clique aqui<\/a>.<\/p>\n

O evento inspirou ampla cobertura da m\u00eddia, como \u201cOs pais de Alexandra, uma menina com uma doen\u00e7a rara: \u201cO importante \u00e9 n\u00e3o desistir e aproveitar cada momento\u201d<\/b><\/a><\/p>\n<\/div>\n

[\/et_pb_text][et_pb_testimonial quote_icon_color=”#FFFFFF” quote_icon_background_color=”#00B2E2″ admin_label=”quote” _builder_version=”4.27.4″ _module_preset=”default” body_font=”|700|||||||” body_font_size=”18px” background_color=”#8FD2ED” background_layout=”dark” global_colors_info=”{}”]<\/p>\n

Ap\u00f3s o diagn\u00f3stico, a fam\u00edlia procurou op\u00e7\u00f5es para tratar a doen\u00e7a, e foi quando eles conheceram a The Progeria Research Foundation (PRF), uma organiza\u00e7\u00e3o americana dedicada \u00e0 pesquisa sobre progeria. Por meio dessa funda\u00e7\u00e3o, Alexandra conseguiu entrar em um ensaio cl\u00ednico testando um medicamento chamado lonafarnib que n\u00e3o cura a doen\u00e7a, mas demonstrou aumentar a expectativa de vida dos pacientes em 30%.<\/p>\n

~<\/i>Esther Mart\u00ednez Gracia, M\u00e3e de Alexandra e Presidente da Associa\u00e7\u00e3o Espanhola de Progeria<\/span><\/p>\n

[\/et_pb_testimonial][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/02\/cimus-group-1024\u00d7683.jpg\u201d title_text=\u201dgrupo cimus\u201d _builder_version=\u201d4.27.4\u2033 _module_preset=\u201dpadr\u00e3o\u201d global_colors_info=\u201d{}\u201d][\/et_pb_image][et_pb_text _builder_version=\u201d4.27.4\u2033 _module_preset=\u201dpadr\u00e3o\u201d text_font_size=\u201d14px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n

(Da esquerda para a direita): David Ara\u00fajo Vilar, pesquisador do CiMUS e presidente-fundador da Sociedade Espanhola de Lipodistrofias; Mabel Loza Garc\u00eda, diretora cient\u00edfica do CiMUS; cofundadora e diretora m\u00e9dica da PRF, Dra. Leslie Gordon; Gumersindo Feijoo Costa, representante da Universidade de Santiago de Compostela, vice-reitorado de Transforma\u00e7\u00e3o Digital e Inova\u00e7\u00e3o; Carmen Cotelo Queijo, representante do Governo da Galiza, diretora da Ag\u00eancia Galega de Inova\u00e7\u00e3o; Esther Mart\u00ednez Gracia, m\u00e3e de Alexandra e presidente da Associa\u00e7\u00e3o Espanhola de Prog\u00e9ria; cofundador e presidente do conselho da PRF, Dr. Scott Berns; Ricardo Villa Bellosta, pesquisador do CiMUS e benefici\u00e1rio da PRF<\/p>\n

[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"

O Centro de Pesquisa em Medicina Molecular e Doen\u00e7as Cr\u00f4nicas (CiMUS) da Universidade de Santiago, na Espanha, convidou os cofundadores da PRF para compartilhar suas hist\u00f3rias em um evento especial no Dia das Doen\u00e7as Raras de 2025.<\/p>","protected":false},"author":2,"featured_media":20138,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_et_pb_use_builder":"on","_et_pb_old_content":"","_et_gb_content_width":"","footnotes":"","_links_to":"","_links_to_target":""},"categories":[3,11,1],"tags":[],"class_list":["post-20127","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","category-homepage-news","category-uncategorized"],"yoast_head":"\nRare Disease Day 2025 I The Progeria Research Foundation<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/www.progeriaresearch.org\/pt\/2025\/05\/27\/rdd-2025-cimus\/\" \/>\n<meta property=\"og:locale\" content=\"pt_PT\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Rare Disease Day 2025 I The Progeria Research Foundation\" \/>\n<meta property=\"og:description\" content=\"The Center for Research in Molecular Medicine and Chronic Diseases (CiMUS) at the University of Santiago in Spain invited PRF co-founders to share their story at a special event on Rare Disease Day 2025.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/www.progeriaresearch.org\/pt\/2025\/05\/27\/rdd-2025-cimus\/\" \/>\n<meta property=\"og:site_name\" content=\"The Progeria Research Foundation\" \/>\n<meta property=\"article:publisher\" content=\"https:\/\/www.facebook.com\/ProgeriaResearch\/\" \/>\n<meta property=\"article:published_time\" content=\"2025-05-27T12:31:55+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-08-07T21:44:03+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/02\/RDD-for-post.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1000\" \/>\n\t<meta property=\"og:image:height\" content=\"1000\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Karen Betournay\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:creator\" content=\"@Progeria\" \/>\n<meta name=\"twitter:site\" content=\"@Progeria\" \/>\n<meta name=\"twitter:label1\" content=\"Written by\" \/>\n\t<meta name=\"twitter:data1\" content=\"Karen Betournay\" \/>\n\t<meta name=\"twitter:label2\" content=\"Est. reading time\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minutos\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.progeriaresearch.org\/ur\/2025\/05\/27\/rdd-2025-cimus\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.progeriaresearch.org\/ur\/2025\/05\/27\/rdd-2025-cimus\/\"},\"author\":{\"name\":\"Karen Betournay\",\"@id\":\"https:\/\/www.progeriaresearch.org\/ta\/#\/schema\/person\/2be6cec85c11aaef7a7602636c5b9946\"},\"headline\":\"PRF Co-Founders Drs. 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