{"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\/it\/2025\/05\/27\/rdd-2025-cimus\/","title":{"rendered":"I co-fondatori di PRF, i dottori Leslie Gordon e Scott Berns, parlano come leader di pensiero al CiMUS, Spagna"},"content":{"rendered":"

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Il Centro per la ricerca in medicina molecolare e malattie croniche (CiMUS) dell'Universit\u00e0 di Santiago in Spagna ha invitato i co-fondatori del PRF a condividere la loro storia in occasione di uno speciale evento per la Giornata delle malattie rare 2025.<\/p>\n

Organizzato e moderato dal ricercatore PRF, il dott. Ricardo Villa-Bellosta, i dottori Gordon e Berns condivideranno gli ultimi progressi della ricerca che hanno un impatto sul campo della ricerca sulla Progeria e il percorso per portare la Progeria dall'oscurit\u00e0 alla scoperta del gene, al trattamento, alla consapevolezza globale e a una possibile cura all'orizzonte! A loro si \u00e8 unita anche Esther Martinez Gracia, madre di Alexandra Perault e amica e sostenitrice di lunga data della PRF.<\/p>\n

Per maggiori informazioni sull'evento, clicca qui<\/a>.<\/p>\n

L'evento ha suscitato un'ampia copertura mediatica, come \u201cI genitori di Alexandra, bambina affetta da malattia rara: \u201cL\u2019importante \u00e8 non arrendersi e sfruttare ogni momento\u201d<\/b><\/a><\/p>\n<\/div>\n

[\/et_pb_text][et_pb_testimonial quote_icon_color=\u201d#FFFFFF\u201d quote_icon_background_color=\u201d#00B2E2\u2033 admin_label=\u201dquote\u201d _builder_version=\u201d4.27.4\u2033 _module_preset=\u201ddefault\u201d body_font=\u201d|700|||||||\u201d body_font_size=\u201d18px\u201d background_color=\u201d#8FD2ED\u201d background_layout=\u201ddark\u201d global_colors_info=\u201d{}\u201d]<\/p>\n

Dopo la diagnosi, la famiglia ha cercato delle opzioni per curare la malattia, ed \u00e8 stato allora che hanno scoperto la Progeria Research Foundation (PRF), un'organizzazione americana dedicata alla ricerca sulla progeria. Grazie a questa fondazione, Alexandra \u00e8 riuscita a entrare in una sperimentazione clinica per testare un farmaco chiamato lonafarnib che non cura la malattia, ma ha dimostrato di aumentare l'aspettativa di vita dei pazienti di 30%.<\/p>\n

~<\/i>Esther Mart\u00ednez Gracia, madre di Alexandra e presidente dell'Associazione spagnola per la 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=\u201dgruppo cimus\u201d _builder_version=\u201d4.27.4\u2033 _module_preset=\u201ddefault\u201d global_colors_info=\u201d{}\u201d][\/et_pb_image][et_pb_text _builder_version=\u201d4.27.4\u2033 _module_preset=\u201ddefault\u201d text_font_size=\u201d14px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n

(Da sinistra): David Ara\u00fajo Vilar, ricercatore CiMUS e presidente-fondatore della Societ\u00e0 spagnola di lipodistrofie; Mabel Loza Garc\u00eda, direttore scientifico CiMUS; co-fondatore PRF e direttore medico, dott. Leslie Gordon; Gumersindo Feijoo Costa, rappresentante dell'Universit\u00e0 di Santiago de Compostela, ufficio del rettore per la trasformazione digitale e l'innovazione; Carmen Cotelo Queijo, rappresentante del governo galiziano, direttore dell'Agenzia galiziana per l'innovazione; Esther Mart\u00ednez Gracia, madre di Alexandra e presidente dell'Associazione spagnola per la progeria; co-fondatore PRF e presidente del consiglio di amministrazione, dott. Scott Berns; Ricardo Villa Bellosta, ricercatore CiMUS e beneficiario PRF<\/p>\n

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

Il Centro per la ricerca in medicina molecolare e malattie croniche (CiMUS) dell'Universit\u00e0 di Santiago in Spagna ha invitato i co-fondatori del PRF a condividere la loro storia in occasione di un evento speciale in occasione della Giornata delle malattie rare del 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\/it\/2025\/05\/27\/rdd-2025-cimus\/\" \/>\n<meta property=\"og:locale\" content=\"it_IT\" \/>\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\/it\/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 minuti\" \/>\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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