{"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\/id\/2025\/05\/27\/rdd-2025-cimus\/","title":{"rendered":"Pendiri PRF, Dr. Leslie Gordon dan Scott Berns berbicara sebagai pemimpin pemikiran di CiMUS, Spanyol"},"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>Pusat Penelitian Kedokteran Molekuler dan Penyakit Kronis (CiMUS) di Universitas Santiago di Spanyol mengundang para pendiri PRF untuk berbagi cerita mereka di acara khusus Hari Penyakit Langka 2025.<\/p>\n<p>Diselenggarakan dan dimoderatori oleh peneliti PRF, Dr. Ricardo Villa-Bellosta, Dr. Gordon dan Berns akan berbagi kemajuan penelitian terbaru yang berdampak pada bidang penelitian Progeria dan perjalanan membawa Progeria dari ketidakjelasan ke penemuan gen, ke pengobatan, ke kesadaran global dan kemungkinan penyembuhan di masa depan! Mereka juga bergabung dengan Esther Martinez Gracia, ibu dari Alexandra Perault dan teman lama serta pendukung PRF.<\/p>\n<p>Untuk informasi lebih lanjut tentang acara tersebut,<a href=\"https:\/\/cimus.usc.gal\/events\/rare-disease-day-progeria-1\"> klik disini<\/a>.<\/p>\n<p>Peristiwa ini mendapat liputan media yang luas, seperti <a href=\"https:\/\/www.antena3.com\/noticias\/sociedad\/padres-alexandra-nina-enfermedad-rara-importante-rendirse-aprovechar-cada-momento_2025030267c4b1341ba31400010be3d8.html\">\u201c<b>Orangtua Alexandra, gadis penderita penyakit langka: \u201cYang penting jangan menyerah dan manfaatkan setiap momen\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>Setelah didiagnosis, keluarganya mencari pilihan untuk mengobati penyakit tersebut, dan saat itulah mereka mengetahui tentang The Progeria Research Foundation (PRF), sebuah organisasi Amerika yang didedikasikan untuk meneliti progeria. Melalui yayasan ini, Alexandra dapat mengikuti uji klinis untuk menguji obat yang disebut lonafarnib yang tidak menyembuhkan penyakit tersebut, tetapi telah terbukti meningkatkan harapan hidup pasien hingga 30%.<\/p>\n<p><i>~<\/i><span>Esther Mart\u00ednez Gracia, Ibu Alexandra dan Presiden Asosiasi Progeria Spanyol<\/span><\/p>\n<p>Bahasa Indonesia: [\/et_pb_testimonial][et_pb_image src=\u201dhttps:\/\/www.progeriaresearch.org\/wp-content\/uploads\/2025\/02\/cimus-group-1024\u00d7683.jpg\u201d title_text=\u201dkelompok 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>(Dari kiri): David Ara\u00fajo Vilar, peneliti CiMUS dan Presiden-Pendiri Spanish Society of Lipodystrophies; Mabel Loza Garc\u00eda, Direktur Ilmiah CiMUS; Pendiri Bersama PRF dan Direktur Medis, Dr. Leslie Gordon; Gumersindo Feijoo Costa, Perwakilan Universitas Santiago de Compostela, Kantor Wakil Rektor untuk Transformasi Digital dan Inovasi; Carmen Cotelo Queijo, Perwakilan Pemerintah Galisia, Direktur Badan Inovasi Galisia; Esther Mart\u00ednez Gracia, Ibu Alexandra dan Presiden Spanish Progeria Association; Pendiri Bersama PRF dan Ketua Dewan, Dr. Scott Berns; Ricardo Villa Bellosta, peneliti CiMUS dan penerima hibah PRF<\/p>\n<p>[\/et_pb_teks][\/et_pb_kolom][\/et_pb_baris][\/et_pb_bagian]<\/p>","protected":false},"excerpt":{"rendered":"<p>Pusat Penelitian Kedokteran Molekuler dan Penyakit Kronis (CiMUS) di Universitas Santiago di Spanyol mengundang para pendiri PRF untuk berbagi cerita mereka di acara khusus pada Hari Penyakit Langka 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\/id\/2025\/05\/27\/rdd-2025-cimus\/\" \/>\n<meta property=\"og:locale\" content=\"id_ID\" \/>\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\/id\/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 menit\" \/>\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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