{"id":4112,"date":"2021-01-03T19:15:03","date_gmt":"2021-01-03T18:15:03","guid":{"rendered":"https:\/\/f101g.org\/la-fundacion-rey-balduino-un-actor-clave-en-el-fomento-de-la-investigacion-cientifica-sobre-enfermedades-raras-en-belgica-por-benedicte-gombault-y-romain-alderweireldt\/"},"modified":"2026-08-11T14:12:19","modified_gmt":"2026-08-11T12:12:19","slug":"la-fundacion-rey-balduino-un-actor-clave-en-el-fomento-de-la-investigacion-cientifica-sobre-enfermedades-raras-en-belgica-por-benedicte-gombault-y-romain-alderweireldt","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/la-fundacion-rey-balduino-un-actor-clave-en-el-fomento-de-la-investigacion-cientifica-sobre-enfermedades-raras-en-belgica-por-benedicte-gombault-y-romain-alderweireldt\/","title":{"rendered":"\u00abLa Fundaci\u00f3n Rey Balduino, un actor clave en el fomento de la investigaci\u00f3n cient\u00edfica sobre enfermedades raras en B\u00e9lgica\u00bb por B\u00e9n\u00e9dicte Gombault y Romain Alderweireldt"},"content":{"rendered":"<p><em>Este art\u00edculo apareci\u00f3 en <a href=\"https:\/\/www.luss.be\/wp-content\/uploads\/2020\/10\/luss-chainon-52-def.pdf\" target=\"_blank\" rel=\"noopener\">\u00abLe Cha\u00eenon &#8211; la revue des associations de patients et de proches\u00bb, N\u00b052 en septiembre de 2020<\/a>.<\/em><\/p>\n<p>Desde hace muchos a\u00f1os, la Fundaci\u00f3n Rey Balduino trabaja de diversas formas para estimular la investigaci\u00f3n de las enfermedades raras y mejorar la atenci\u00f3n a los pacientes.<\/p>\n<p>La Fundaci\u00f3n Rey Balduino alberga el Fondo de Enfermedades Raras y Medicamentos Hu\u00e9rfanos, que re\u00fane a muchas personas implicadas en la lucha contra las enfermedades raras. En concreto, este fondo sent\u00f3 las bases del Plan Belga de Enfermedades Raras. <\/p>\n<p>La Fundaci\u00f3n Rey Balduino tambi\u00e9n cre\u00f3 el Fondo Generet, que, para \u00abimpulsar\u00bb la investigaci\u00f3n, concede un premio anual de un mill\u00f3n de euros a la investigaci\u00f3n pionera sobre enfermedades raras en una universidad belga.<\/p>\n<p>La Fundaci\u00f3n tambi\u00e9n alberga el Fondo de Investigaci\u00f3n Alphonse &#038; Jean Forton contra la Fibrosis Qu\u00edstica, que desde 1997 ha apoyado nada menos que 53 proyectos de investigaci\u00f3n por un valor total de 8 millones de euros. Este fondo ha dado un gran impulso a la investigaci\u00f3n de la fibrosis qu\u00edstica en B\u00e9lgica. <\/p>\n<p>En los \u00faltimos a\u00f1os, la Fundaci\u00f3n Rey Balduino ha creado varios fondos para apoyar la investigaci\u00f3n de enfermedades raras espec\u00edficas. Los promotores de estos fondos a menudo se enfrentan ellos mismos a estas enfermedades, ya sea personalmente o en su entorno inmediato. Algunos ejemplos son el <em>Fondo Vlinderkindje<\/em>, que promueve la investigaci\u00f3n de la epiderm\u00f3lisis bullosa simple, y el proyecto piloto <em>Mind the Gap!<\/em>, que promueve temas prioritarios de investigaci\u00f3n en la lucha contra la esclerosis tuberosa de Bourneville.  <\/p>\n<p>Por \u00faltimo, la Fundaci\u00f3n Rey Balduino, que tambi\u00e9n alberga el Fondo de Genomas&nbsp;101&nbsp;, ha comprendido claramente la importancia de desarrollar la investigaci\u00f3n gen\u00f3mica para luchar contra las enfermedades raras y de tener en cuenta los retos sociales asociados a la secuenciaci\u00f3n gen\u00f3mica. A petici\u00f3n del Ministro Federal de Sanidad, la Fundaci\u00f3n Rey Balduino ha dirigido recientemente un amplio debate p\u00fablico sobre la utilizaci\u00f3n del genoma en la asistencia sanitaria (<em>\u00abMi ADN, \u00bftodos preocupados&nbsp;?<\/em>\u00ab), con el objetivo de contribuir a definir una pol\u00edtica gen\u00f3mica de futuro en B\u00e9lgica. <\/p>\n<p><strong>B\u00e9n\u00e9dicte GOMBAULT, Fundaci\u00f3n Rey Balduino y Romain ALDERWEIRELDT, Fundaci\u00f3n 101 Genomas<\/strong><\/p>\n<p><strong><em>Para m\u00e1s informaci\u00f3n&nbsp;:<\/em><\/strong>&nbsp;<a href=\"https:\/\/www.kbs-frb.be\/\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.kbs-frb.be\/<\/a><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Este art\u00edculo apareci\u00f3 en \u00abLe Cha\u00eenon &#8211; la revue des associations de patients et de proches\u00bb, N\u00b052 en septiembre de &hellip;<\/p>\n","protected":false},"author":3,"featured_media":3268,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[185],"tags":[],"class_list":["post-4112","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-enfermedades-raras"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.2 - 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