{"id":20127,"date":"2025-05-27T08:31:55","date_gmt":"2025-05-27T12:31:55","guid":{"rendered":"https:\/\/www.progeriaresearch.org\/?p=20127"},"modified":"2026-05-18T09:54:30","modified_gmt":"2026-05-18T13:54:30","slug":"rdd-2025-cimus","status":"publish","type":"post","link":"https:\/\/www.progeriaresearch.org\/de\/2025\/05\/27\/rdd-2025-cimus\/","title":{"rendered":"PRF-Mitbegr\u00fcnder Dr. Leslie Gordon und Dr. Scott Berns sprechen als Vordenker bei CiMUS, Spanien"},"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>Das Zentrum f\u00fcr Forschung in Molekularmedizin und chronischen Erkrankungen (CiMUS) an der Universit\u00e4t von Santiago in Spanien hat die Mitbegr\u00fcnder des PRF eingeladen, ihre Geschichte bei einer besonderen Veranstaltung zum Tag der seltenen Erkrankungen 2025 zu erz\u00e4hlen.<\/p>\n<p>Organisiert und moderiert vom PRF-Forscher Dr. Ricardo Villa-Bellosta werden Dr. Gordon und Dr. Berns die neuesten Forschungsfortschritte auf dem Gebiet der Progerieforschung vorstellen und den Weg von der Entdeckung der Gene, der Behandlung und dem weltweiten Bewusstsein f\u00fcr Progerie und einer m\u00f6glichen Heilung am Horizont vorstellen! Zu ihnen gesellte sich auch Esther Martinez Gracia, die Mutter von Alexandra Perault und langj\u00e4hrige Freundin und Unterst\u00fctzerin von PRF.<\/p>\n<p>Weitere Informationen zur Veranstaltung erhalten Sie unter<a href=\"https:\/\/cimus.usc.gal\/events\/rare-disease-day-progeria-1\"> klicken Sie hier<\/a>.<\/p>\n<p>Die Veranstaltung l\u00f6ste ein umfangreiches Medienecho aus, beispielsweise <a href=\"https:\/\/www.antena3.com\/noticias\/sociedad\/padres-alexandra-nina-enfermedad-rara-importante-rendirse-aprovechar-cada-momento_2025030267c4b1341ba31400010be3d8.html\">\u201c<b>Die Eltern von Alexandra, einem M\u00e4dchen mit einer seltenen Krankheit: \u201eDas Wichtigste ist, nicht aufzugeben und jeden Moment zu nutzen\u201c<\/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>Nach ihrer Diagnose suchte die Familie nach Behandlungsm\u00f6glichkeiten f\u00fcr die Krankheit und erfuhr dabei von der Progeria Research Foundation (PRF), einer amerikanischen Organisation, die sich der Erforschung von Progerie widmet. \u00dcber diese Stiftung konnte Alexandra an einer klinischen Studie teilnehmen, in der ein Medikament namens Lonafarnib getestet wurde, das die Krankheit zwar nicht heilt, aber die Lebenserwartung der Patienten nachweislich um 30% erh\u00f6ht.<\/p>\n<p><i>~<\/i><span>Esther Mart\u00ednez Gracia, Mutter von Alexandra und Pr\u00e4sidentin der spanischen Progerie-Vereinigung<\/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=\u201dcimus group\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>(Von links): David Ara\u00fajo Vilar, CiMUS-Forscher und Pr\u00e4sident und Gr\u00fcnder der spanischen Gesellschaft f\u00fcr Lipodystrophien; Mabel Loza Garc\u00eda, wissenschaftliche Leiterin von CiMUS; PRF-Mitbegr\u00fcnder und medizinischer Direktor, Dr. Leslie Gordon; Gumersindo Feijoo Costa, Vertreter der Universit\u00e4t von Santiago de Compostela, Rektorat f\u00fcr digitale Transformation und Innovation; Carmen Cotelo Queijo, Vertreterin der galizischen Regierung, Direktorin der galizischen Innovationsagentur; Esther Mart\u00ednez Gracia, Mutter von Alexandra und Pr\u00e4sidentin der spanischen Progerie-Vereinigung; PRF-Mitbegr\u00fcnder und Vorstandsvorsitzender, Dr. Scott Berns; Ricardo Villa Bellosta, CiMUS-Forscher und PRF-Stipendiat<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>Das Zentrum f\u00fcr Forschung in Molekularmedizin und chronischen Krankheiten (CiMUS) an der Universit\u00e4t von Santiago in Spanien hat die Mitbegr\u00fcnder des PRF eingeladen, ihre Geschichte bei einer Sonderveranstaltung am Tag der seltenen Erkrankungen 2025 zu erz\u00e4hlen.<\/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":[3,1],"tags":[],"class_list":["post-20127","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","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\/de\/2025\/05\/27\/rdd-2025-cimus\/\" \/>\n<meta property=\"og:locale\" content=\"de_DE\" \/>\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\/de\/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=\"2026-05-18T13:54:30+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 Minuten\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/www.progeriaresearch.org\/2025\/05\/27\/rdd-2025-cimus\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/www.progeriaresearch.org\/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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