{"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\/nl\/2025\/05\/27\/rdd-2025-cimus\/","title":{"rendered":"PRF-medeoprichters Drs. Leslie Gordon en Scott Berns spreken als thought leaders op CiMUS, Spanje"},"content":{"rendered":"<p>[et_pb_section fb_built=\u201d1\u2033 _builder_version=\u201d4.16\u2033 global_colors_info=\u201d{}\u201d][et_pb_row _builder_version=\u201d4.16\u2033 background_size=\u201dinitial\u201d background_position=\u201dtop_left\u201d background_repeat=\u201drepeat\u201d global_colors_info=\u201d{}\u201d][et_pb_column type=\u201d4_4\u2033 _builder_version=\u201d4.16\u2033 custom_padding=\u201d|||\u201d global_colors_info=\u201d{}\u201d custom_padding__hover=\u201d|||\u201d][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/02\/20250129_Poster_Progeria_final.jpg\u201d title_text=\u201d20250129_Poster_Progeria_final\u201d url=\u201dhttps:\/\/www.charitynavigator.org\/ein\/043460220\u2033 align=\u201dcenter\u201d admin_label=\u201dlogos\u201d _builder_version=\u201d4.27.4\u2033 _module_preset=\u201ddefault\u201d width=\u201d100%\u201d max_width=\u201d100%\u201d global_colors_info=\u201d{}\u201d][\/et_pb_image][et_pb_text _builder_version=\u201d4.27.4\u2033 text_font_size=\u201d18px\u201d background_size=\u201dinitial\u201d background_position=\u201dtop_left\u201d background_repeat=\u201drepeat\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<div class=\"elementToProof\">\n<p>Het Centrum voor Onderzoek in Moleculaire Geneeskunde en Chronische Ziekten (CiMUS) aan de Universiteit van Santiago in Spanje heeft de medeoprichters van PRF uitgenodigd om hun verhaal te delen tijdens een speciaal evenement ter ere van de Zeldzame Ziekten Dag 2025.<\/p>\n<p>Georganiseerd en gemodereerd door PRF-onderzoeker, Dr. Ricardo Villa-Bellosta, zullen Drs. Gordon en Berns de nieuwste onderzoeksontwikkelingen delen die van invloed zijn op het gebied van Progeria-onderzoek en de reis om Progeria van onbekendheid naar genen te brengen, naar behandeling, naar wereldwijd bewustzijn en een mogelijke genezing aan de horizon! Ze werden ook vergezeld door Esther Martinez Gracia, moeder van Alexandra Perault en langdurige vriendin en supporter van PRF.<\/p>\n<p>Voor meer informatie over het evenement,<a href=\"https:\/\/cimus.usc.gal\/events\/rare-disease-day-progeria-1\"> klik hier<\/a>.<\/p>\n<p>Het evenement zorgde voor uitgebreide media-aandacht, zoals <a href=\"https:\/\/www.antena3.com\/noticias\/sociedad\/padres-alexandra-nina-enfermedad-rara-importante-rendirse-aprovechar-cada-momento_2025030267c4b1341ba31400010be3d8.html\">\u201c<b>Ouders van Alexandra, een meisje met een zeldzame ziekte: \u201cHet belangrijkste is om niet op te geven en van elk moment te genieten\u201d<\/b><\/a><\/p>\n<\/div>\n<p>[\/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<p>Na haar diagnose zocht de familie naar opties om de ziekte te behandelen, en toen hoorden ze over The Progeria Research Foundation (PRF), een Amerikaanse organisatie die zich toelegt op onderzoek naar progeria. Via deze stichting kon Alexandra deelnemen aan een klinische proef met een medicijn genaamd lonafarnib dat de ziekte niet geneest, maar waarvan is aangetoond dat het de levensverwachting van pati\u00ebnten met 30% verhoogt.<\/p>\n<p><i>~<\/i><span>Esther Mart\u00ednez Gracia, moeder van Alexandra en voorzitter van de Spaanse Progeriavereniging<\/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 groep\u201d _builder_version=\u201d4.27.4\u2033 _module_preset=\u201dstandaard\u201d global_colors_info=\u201d{}\u201d][\/et_pb_image][et_pb_text _builder_version=\u201d4.27.4\u2033 _module_preset=\u201dstandaard\u201d text_font_size=\u201d14px\u201d global_colors_info=\u201d{}\u201d]<\/p>\n<p>(Van links naar rechts): David Ara\u00fajo Vilar, CiMUS-onderzoeker en voorzitter-oprichter van de Spaanse Vereniging voor Lipodystrofie\u00ebn; Mabel Loza Garc\u00eda, wetenschappelijk directeur van CiMUS; PRF-medeoprichter en medisch directeur, Dr. Leslie Gordon; Gumersindo Feijoo Costa, vertegenwoordiger van de Universiteit van Santiago de Compostela, kantoor van de vicekanselier voor digitale transformatie en innovatie; Carmen Cotelo Queijo, vertegenwoordiger van de Galicische regering, directeur van het Galicische Agentschap voor Innovatie; Esther Mart\u00ednez Gracia, moeder van Alexandra en voorzitter van de Spaanse Progeria-vereniging; PRF-medeoprichter en bestuursvoorzitter, Dr. Scott Berns; Ricardo Villa Bellosta, CiMUS-onderzoeker en PRF-ontvanger<\/p>\n<p>[\/et_pb_text][\/et_pb_column][\/et_pb_row][\/et_pb_section]<\/p>","protected":false},"excerpt":{"rendered":"<p>Het Centrum voor Onderzoek in Moleculaire Geneeskunde en Chronische Ziekten (CiMUS) aan de Universiteit van Santiago in Spanje nodigde de medeoprichters van PRF uit om hun verhaal te delen tijdens een speciaal evenement op Zeldzame Ziekten Dag 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":[3,1],"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\/nl\/2025\/05\/27\/rdd-2025-cimus\/\" \/>\n<meta property=\"og:locale\" content=\"nl_NL\" \/>\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\/nl\/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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