{"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\/es\/2025\/05\/27\/rdd-2025-cimus\/","title":{"rendered":"Los cofundadores de PRF, los doctores Leslie Gordon y Scott Berns, hablan como l\u00edderes de opini\u00f3n en CiMUS, Espa\u00f1a"},"content":{"rendered":"<p>[et_pb_section fb_built=&#8221;1&#8243; _builder_version=&#8221;4.16&#8243; global_colors_info=&#8221;{}&#8221;][et_pb_row _builder_version=&#8221;4.16&#8243; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;][et_pb_column type=&#8221;4_4&#8243; _builder_version=&#8221;4.16&#8243; custom_padding=&#8221;|||&#8221; global_colors_info=&#8221;{}&#8221; custom_padding__hover=&#8221;|||&#8221;][et_pb_image src=&#8221;https:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/02\/20250129_Poster_Progeria_final.jpg&#8221; title_text=&#8221;20250129_Poster_Progeria_final&#8221; url=&#8221;https:\/\/www.charitynavigator.org\/ein\/043460220&#8243; align=&#8221;center&#8221; admin_label=&#8221;logos&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; width=&#8221;100%&#8221; max_width=&#8221;100%&#8221; global_colors_info=&#8221;{}&#8221;][\/et_pb_image][et_pb_text _builder_version=&#8221;4.27.4&#8243; text_font_size=&#8221;18px&#8221; background_size=&#8221;initial&#8221; background_position=&#8221;top_left&#8221; background_repeat=&#8221;repeat&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<div class=\"elementToProof\">\n<p>El Centro de Investigaci\u00f3n en Medicina Molecular y Enfermedades Cr\u00f3nicas (CiMUS) de la Universidad de Santiago en Espa\u00f1a invit\u00f3 a los cofundadores de PRF a compartir su historia en un evento especial del D\u00eda de las Enfermedades Raras 2025.<\/p>\n<p>Organizado y moderado por el investigador de PRF, el Dr. Ricardo Villa-Bellosta, los Dres. Gordon y Berns compartir\u00e1n los \u00faltimos avances de investigaci\u00f3n que impactan en el campo de la investigaci\u00f3n de la progeria y el camino para llevar la progeria desde la oscuridad al descubrimiento de genes, al tratamiento, a la conciencia global y a una posible cura en el horizonte. Tambi\u00e9n estuvieron acompa\u00f1ados por Esther Mart\u00ednez Gracia, madre de Alexandra Perault y amiga y partidaria de PRF desde hace mucho tiempo.<\/p>\n<p>Para obtener m\u00e1s informaci\u00f3n sobre el evento,<a href=\"https:\/\/cimus.usc.gal\/events\/rare-disease-day-progeria-1\"> haga clic aqu\u00ed<\/a>.<\/p>\n<p>El evento inspir\u00f3 una amplia cobertura medi\u00e1tica, como <a href=\"https:\/\/www.antena3.com\/noticias\/sociedad\/padres-alexandra-nina-enfermedad-rara-importante-rendirse-aprovechar-cada-momento_2025030267c4b1341ba31400010be3d8.html\">\u201c<b>Los padres de Alexandra, una ni\u00f1a con una enfermedad rara: \u201cLo importante es no rendirse y aprovechar cada momento\u201d<\/b><\/a><\/p>\n<\/div>\n<p>[\/et_pb_text][et_pb_testimonial quote_icon_color=&#8221;#FFFFFF&#8221; quote_icon_background_color=&#8221;#00B2E2&#8243; admin_label=&#8221;quote&#8221; _builder_version=&#8221;4.27.4&#8243; _module_preset=&#8221;default&#8221; body_font=&#8221;|700|||||||&#8221; body_font_size=&#8221;18px&#8221; background_color=&#8221;#8FD2ED&#8221; background_layout=&#8221;dark&#8221; global_colors_info=&#8221;{}&#8221;]<\/p>\n<p>Tras su diagn\u00f3stico, la familia busc\u00f3 opciones para tratar la enfermedad y fue entonces cuando conocieron la fundaci\u00f3n The Progeria Research Foundation (PRF), una organizaci\u00f3n estadounidense dedicada a la investigaci\u00f3n de la progeria. A trav\u00e9s de esta fundaci\u00f3n, Alexandra pudo ingresar a un ensayo cl\u00ednico en el que se prueba un medicamento llamado lonafarnib que no cura la enfermedad, pero que ha demostrado aumentar la expectativa de vida de los pacientes en un 30%.<\/p>\n<p><i>~<\/i><span>Esther Mart\u00ednez Gracia, madre de Alexandra y presidenta de la Asociaci\u00f3n Espa\u00f1ola de Progeria<\/span><\/p>\n<p>[\/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=\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<p>(De izquierda a derecha): David Ara\u00fajo Vilar, investigador del CiMUS y presidente fundador de la Sociedad Espa\u00f1ola de Lipodistrofias; Mabel Loza Garc\u00eda, directora cient\u00edfica del CiMUS; cofundadora y directora m\u00e9dica del PRF, la Dra. Leslie Gordon; Gumersindo Feijoo Costa, representante de la Universidad de Santiago de Compostela, Vicerrectorado de Transformaci\u00f3n Digital e Innovaci\u00f3n; Carmen Cotelo Queijo, representante del Gobierno gallego, directora de la Agencia Gallega de Innovaci\u00f3n; Esther Mart\u00ednez Gracia, madre de Alexandra y presidenta de la Asociaci\u00f3n Espa\u00f1ola de Progeria; cofundador y presidente de la junta directiva del PRF, el Dr. Scott Berns; Ricardo Villa Bellosta, investigador del CiMUS y becario del PRF<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>El Centro de Investigaci\u00f3n en Medicina Molecular y Enfermedades Cr\u00f3nicas (CiMUS) de la Universidad de Santiago en Espa\u00f1a invit\u00f3 a los cofundadores de PRF a compartir su historia en un evento especial en el D\u00eda de las Enfermedades Raras 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":"<!-- This site is optimized with the Yoast SEO plugin v26.8 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Rare 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\/es\/2025\/05\/27\/rdd-2025-cimus\/\" \/>\n<meta property=\"og:locale\" content=\"es_ES\" \/>\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\/es\/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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