{"id":4081,"date":"2021-02-28T19:38:10","date_gmt":"2021-02-28T18:38:10","guid":{"rendered":"https:\/\/f101g.org\/radiorgs-ik-ben-geen-eenhoorn-campagne\/"},"modified":"2021-02-28T19:38:10","modified_gmt":"2021-02-28T18:38:10","slug":"radiorgs-ik-ben-geen-eenhoorn-campagne","status":"publish","type":"post","link":"https:\/\/f101g.org\/nl\/radiorgs-ik-ben-geen-eenhoorn-campagne\/","title":{"rendered":"RaDiOrg\u2019s \u201eIk ben geen eenhoorn\u201d campagne"},"content":{"rendered":"<p><strong>Met de campagne &#8216;Ik ben geen eenhoorn&#8217; herinnert RaDiOrg mensen eraan dat, hoewel ze vaak onzichtbaar zijn, mensen met een zeldzame ziekte echt bestaan&#8230; in tegenstelling tot eenhoorns. Voor het eerst zal deze nationale campagne ten goede komen aan de 8 Belgische ziekenhuizen voor zeldzame ziekten. Lees meer over de uitdagingen, de doelstellingen en hoe de F101G zijn steentje bijdraagt.<\/strong>.<\/p>\n<p>Sinds 2019 vertegenwoordigt Ludivine de Belgische Marfan Syndroom Vereniging<a href=\"https:\/\/www.marfan.be\/\" target=\"_blank\" rel=\"noopener\">(ABSM<\/a>) en de 101 Genomes Foundation bij RaDiOrg. RaDiOrg is de overkoepelende organisatie voor pati\u00ebntenorganisaties voor zeldzame ziekten in Belgi\u00eb. Ludivine werd uitgenodigd om lid te worden van de raad van bestuur van RaDiOrg, waar ze de functie van vicevoorzitter<a href=\"https:\/\/www.radiorg.be\/fr\/a-propos\/notre-equipe\/\" target=\"_blank\" rel=\"noopener\">(Team RaDiOrg<\/a>) bekleedt.<\/p>\n<p>Onder impuls van directeur Eva Schoeters lanceerde RaDiOrg dit jaar de campagne<em>&#8216;Ik ben geen eenhoorn<\/em>&#8216; om het publiek bewust te maken van de oorzaak van zeldzame ziekten<a href=\"https:\/\/www.radiorg.be\/fr\/a-propos\/notaunicorn\/\" target=\"_blank\" rel=\"noopener\">(#notaunicorn<\/a>).<\/p>\n<p>Voor de eerste keer hebben het CHU de Li\u00e8ge, UZ Gent, H\u00f4pital Erasme, UZ Brussel, Cliniques Universitaires Saint Luc, UZ Leuven, Grand H\u00f4pital de Charleroi en UZA &#8211; met andere woorden, de 8 Belgische ziekenhuizen met een &#8216;zeldzame ziekte functie&#8217; &#8211; zich achter de campagne geschaard die door RaDiOrg werd opgestart en de boodschap die ze uitdraagt (<a href=\"https:\/\/www.radiorg.be\/fr\/a-propos\/notaunicorn\/support-us\" target=\"_blank\" rel=\"noopener\">8 centra<\/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>Veertien farmaceutische bedrijven (Boehringer Ingelheim, Chiesi, Gilead, Janssen, Novartis, Pfizer, Roche, Sanofi, Sobi, Takeda, UCB, Ultragenyx, Biogen, Bristol Myers Squibb), pharma.be (de algemene vereniging van de farmaceutische industrie) en de Nationale Loterij steunen de #notaunicorn campagne<a href=\"https:\/\/www.radiorg.be\/fr\/a-propos\/notaunicorn\/sponsors\" target=\"_blank\" rel=\"noopener\">(Sponsors<\/a>).<\/p>\n<p>Het doel van de campagne is om het publiek bewust te maken van&nbsp;:<\/p>\n<ul>\n<li>Dat er meer dan 6.100 zeldzame ziekten zijn<\/li>\n<li>Medicijnen zijn slechts beschikbaar voor 5% van hen<\/li>\n<li>Pati\u00ebnten wachten gemiddeld 4,5 jaar op een diagnose<\/li>\n<li>75% van de mensen met een zeldzame ziekte is kind<\/li>\n<li>Dat er in Belgi\u00eb 500.000 mensen zijn met een zeldzame ziekte<\/li>\n<li>Dat onderzoek naar zeldzame ziekten moet worden ondersteund<\/li>\n<\/ul>\n<p><strong>Hoewel ze vaak onzichtbaar zijn, zijn pati\u00ebnten met zeldzame ziekten geen eenhoorns. Ze bestaan echt en ze zijn overal om ons heen. Deze niet-unicorns kunnen ons enorm veel leren over de mensheid (en niet alleen op wetenschappelijk gebied).<\/strong>.<\/p>\n<p>Het is aan ons om naar hen te luisteren en de middelen te vinden om onderzoek te financieren!<\/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>Met de campagne &#8216;Ik ben geen eenhoorn&#8217; herinnert RaDiOrg mensen eraan dat, hoewel ze vaak onzichtbaar zijn, mensen met een &hellip;<\/p>\n","protected":false},"author":3,"featured_media":3354,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_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}},"categories":[],"tags":[],"class_list":["post-4081","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v27.7 - 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