{"id":4077,"date":"2021-02-28T19:38:10","date_gmt":"2021-02-28T18:38:10","guid":{"rendered":"https:\/\/f101g.org\/campana-no-soy-un-unicornio-de-radiorg\/"},"modified":"2026-08-11T14:12:18","modified_gmt":"2026-08-11T12:12:18","slug":"campana-no-soy-un-unicornio-de-radiorg","status":"publish","type":"post","link":"https:\/\/f101g.org\/es\/campana-no-soy-un-unicornio-de-radiorg\/","title":{"rendered":"Campa\u00f1a \u00abNo soy un unicornio\u00bb de RaDiOrg"},"content":{"rendered":"<p><strong>Con la campa\u00f1a \u00abNo soy un unicornio\u00bb, RaDiOrg recuerda a la gente que, aunque a menudo son invisibles, las personas con enfermedades raras realmente existen&#8230; a diferencia de los unicornios. Por primera vez, esta campa\u00f1a nacional beneficiar\u00e1 a los 8 hospitales belgas de enfermedades raras. M\u00e1s informaci\u00f3n sobre sus retos y objetivos, y sobre el papel que desempe\u00f1a la F101G.  <\/strong>.<\/p>\n<p>Desde 2019, Ludivine representa a la Asociaci\u00f3n Belga del S\u00edndrome de Marfan (<a href=\"https:\/\/www.marfan.be\/\" target=\"_blank\" rel=\"noopener\">ABSM<\/a>) y a la Fundaci\u00f3n 101 Genomas en RaDiOrg. RaDiOrg es la organizaci\u00f3n que agrupa a las organizaciones de pacientes de enfermedades raras en B\u00e9lgica. Ludivine ha sido invitada a formar parte del Consejo de Administraci\u00f3n de RaDiOrg, donde ocupa el cargo de Vicepresidenta (<a href=\"https:\/\/www.radiorg.be\/fr\/a-propos\/notre-equipe\/\" target=\"_blank\" rel=\"noopener\">Equipo RaDiOrg<\/a>).  <\/p>\n<p>Bajo el impulso de su directora, Eva Schoeters, RaDiOrg lanz\u00f3 este a\u00f1o la campa\u00f1a<em>\u00abNo soy un unicornio<\/em>\u00bb para sensibilizar a la opini\u00f3n p\u00fablica sobre la causa de las enfermedades raras<a href=\"https:\/\/www.radiorg.be\/fr\/a-propos\/notaunicorn\/\" target=\"_blank\" rel=\"noopener\">(#notaunicorn<\/a>).<\/p>\n<p>Por primera vez, el CHU de Lieja, UZ Gent, H\u00f4pital Erasme, UZ Brussel, Cliniques Universitaires Saint Luc, UZ Leuven, Grand H\u00f4pital de Charleroi y UZA &#8211; en otras palabras, los 8 hospitales belgas \u00abfunci\u00f3n enfermedad rara\u00bb &#8211; se han unido en torno a la campa\u00f1a iniciada y el mensaje transmitido por RaDiOrg (<a href=\"https:\/\/www.radiorg.be\/fr\/a-propos\/notaunicorn\/support-us\" target=\"_blank\" rel=\"noopener\">8 Centros<\/a>).<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"wp-image-1839 aligncenter\" src=\"https:\/\/f101g.org\/wp-content\/uploads\/2021\/02\/20210228-F101G-Not-a-Unicorn-8centres-1-1.png\" alt=\"\" width=\"521\" height=\"391\"><\/p>\n<p>Catorce empresas farmac\u00e9uticas (Boehringer Ingelheim, Chiesi, Gilead, Janssen, Novartis, Pfizer, Roche, Sanofi, Sobi, Takeda, UCB, Ultragenyx, Biogen, Bristol Myers Squibb), pharma.be (la asociaci\u00f3n general de la industria farmac\u00e9utica) y la Loter\u00eda Nacional apoyan la campa\u00f1a #notaunicornio<a href=\"https:\/\/www.radiorg.be\/fr\/a-propos\/notaunicorn\/sponsors\" target=\"_blank\" rel=\"noopener\">(patrocinadores<\/a>).<\/p>\n<p>El objetivo de la campa\u00f1a es sensibilizar a la opini\u00f3n p\u00fablica&nbsp;:<\/p>\n<ul>\n<li>Que hay m\u00e1s de 6.100 enfermedades raras<\/li>\n<li>S\u00f3lo se dispone de medicamentos para el 5% de ellos<\/li>\n<li>Los pacientes esperan una media de 4,5 a\u00f1os para un diagn\u00f3stico<\/li>\n<li>El 75% de las personas con enfermedades raras son ni\u00f1os<\/li>\n<li>Que hay 500.000 personas con enfermedades raras en B\u00e9lgica<\/li>\n<li>Hay que apoyar la investigaci\u00f3n de las enfermedades raras<\/li>\n<\/ul>\n<p><strong>Aunque a menudo son invisibles, los pacientes de enfermedades raras no son unicornios. Existen de verdad y est\u00e1n a nuestro alrededor. Estos no-unicornios tienen mucho que ense\u00f1arnos sobre la humanidad (y no s\u00f3lo cient\u00edficamente).  <\/strong>.<\/p>\n<p>Nos corresponde a nosotros escucharles y encontrar los medios para financiar la investigaci\u00f3n.<\/p>\n<p>F101G<\/p>\n<p><a href=\"https:\/\/www.radiorg.be\/fr\/a-propos\/notaunicorn\/support-us\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-1836 aligncenter\" src=\"https:\/\/f101g.org\/wp-content\/uploads\/2021\/02\/P1189_RadiOrg_Infographic-Fundraising_1x1-FR-600x600-1-1.png\" alt=\"\" width=\"600\" height=\"600\"><\/a><\/p>\n<p>&nbsp;<\/p>\n<p><a href=\"https:\/\/www.radiorg.be\/nl\/over-ons\/notaunicorn\/support-us\/\" target=\"_blank\" rel=\"noopener\"><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-1837 aligncenter\" src=\"https:\/\/f101g.org\/wp-content\/uploads\/2021\/02\/P1189_RadiOrg_Infographic-Fundraising_1x1-NL-600x600-1-1.png\" alt=\"\" width=\"600\" height=\"600\"><\/a><\/p>\n<p>&nbsp;<\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Con la campa\u00f1a \u00abNo soy un unicornio\u00bb, RaDiOrg recuerda a la gente que, aunque a menudo son invisibles, las personas &hellip;<\/p>\n","protected":false},"author":3,"featured_media":3358,"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-4077","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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