{"id":4123,"date":"2021-01-02T20:56:10","date_gmt":"2021-01-02T19:56:10","guid":{"rendered":"https:\/\/f101g.org\/toegang-tot-geneesmiddelen-in-de-context-van-zeldzame-ziekten-door-prof-dr-g-m-b-sandy-tubeuf-en-romain-alderweireldt\/"},"modified":"2021-01-02T20:56:10","modified_gmt":"2021-01-02T19:56:10","slug":"toegang-tot-geneesmiddelen-in-de-context-van-zeldzame-ziekten-door-prof-dr-g-m-b-sandy-tubeuf-en-romain-alderweireldt","status":"publish","type":"post","link":"https:\/\/f101g.org\/nl\/toegang-tot-geneesmiddelen-in-de-context-van-zeldzame-ziekten-door-prof-dr-g-m-b-sandy-tubeuf-en-romain-alderweireldt\/","title":{"rendered":"\u201eToegang tot geneesmiddelen in de context van zeldzame ziekten\u201d door Prof. Dr. G. M. B. Sandy Tubeuf en Romain Alderweireldt"},"content":{"rendered":"<p style=\"text-align: justify;\"><a href=\"#_ftn1\" name=\"_ftnref1\"><\/a><\/p>\n<p><em>Dit artikel verscheen in <a href=\"https:\/\/www.luss.be\/wp-content\/uploads\/2020\/10\/luss-chainon-52-def.pdf\" target=\"_blank\" rel=\"noopener\">\u201eLe Cha\u00eenon &#8211; la revue des associations de patients et de proches\u201d, nr. 52 in september 2020<\/a>.<\/em><\/p>\n<p style=\"text-align: justify;\">Uit onderzoek van professor Sandy Tubeuf en dokter Setti Rais (Louvain Institute of Data Analysis and Modeling in Economics and Statistics) naar economische kwesties in verband met zeldzame ziekten blijkt dat de regelgeving inzake weesgeneesmiddelen weliswaar heeft geleid tot een toename van het aantal klinische proeven en wetenschappelijke publicaties over zeldzame ziekten, maar dat deze toename ten minste twee perverse effecten heeft gehad&nbsp;:<\/p>\n<ul style=\"text-align: justify;\">\n<li>Investeringen in onderzoek en ontwikkeling komen voornamelijk ten goede aan zeldzame ziekten die op volwassen leeftijd voorkomen en er wordt het minst ge\u00efnvesteerd in zeldzame ziekten die op jonge leeftijd voorkomen, ondanks het feit dat een op de twee zeldzame ziekten jonge kinderen treft&nbsp;;<\/li>\n<li>Hoewel er meer weesgeneesmiddelen op de markt zijn, vormen de zeer hoge prijzen die farmaceutische bedrijven vragen een obstakel voor effectieve toegang tot deze geneesmiddelen.<\/li>\n<\/ul>\n<p style=\"text-align: justify;\">Om deze problemen te overwinnen, bevelen deze auteurs ten eerste aan om <strong>onderzoek echt te stimuleren door databases op te zetten en te bundelen, zodat we echt vooruitgang kunnen boeken in onze kennis van zeldzame ziekten<\/strong>.<\/p>\n<p style=\"text-align: justify;\">Ten tweede benadrukken de auteurs <strong>de noodzaak om de co\u00f6rdinatie en dus de onderhandelingsmacht van politieke besluitvormers ten opzichte van fabrikanten te vergroten om de risico&#8217;s van de ontwikkeling van geneesmiddelen evenwichtiger te verdelen en om beter te kunnen onderhandelen over geneesmiddelenprijzen<\/strong>.<\/p>\n<p style=\"text-align: justify;\">Ten derde en tot slot, om het winstbejag van industri\u00eblen te verminderen, pleiten de onderzoekers voor eerlijkere prijzen, die het resultaat zouden zijn van een grotere transparantie van de kosten voor onderzoek en ontwikkeling en rekening houden met het algemeen welzijn van de maatschappij.<\/p>\n<p style=\"text-align: justify;\"><strong>Professor Sandy Tubeuf, Gezondheidseconomie, UCL en Romain ALDERWEIRELDT, Stichting&nbsp;101&nbsp;Genomes<\/strong><\/p>\n<p style=\"text-align: justify;\"><strong><em>Voor meer informatie&nbsp;:  <\/em><\/strong><\/p>\n<p style=\"text-align: justify;\"><a href=\"https:\/\/www.regardseconomiques.be\/index.php\/index.php?option=com_reco&amp;view=article&amp;cid=198\" target=\"_blank\" rel=\"noopener noreferrer\">https:\/\/www.regardseconomiques.be\/index.php\/index.php?option=com_reco&amp;view=article&amp;cid=198.<\/a><\/p>\n<p style=\"text-align: justify;\">&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Dit artikel verscheen in \u201eLe Cha\u00eenon &#8211; la revue des associations de patients et de proches\u201d, nr. 52 in september &hellip;<\/p>\n","protected":false},"author":3,"featured_media":3259,"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-4123","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 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>&quot;Toegang tot geneesmiddelen in de context van zeldzame ziekten&quot; door Prof. Dr. G. M. B. Sandy Tubeuf en Romain Alderweireldt%page%-101 Genomes Foundation - Genomics voor zeldzame ziekten<\/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:\/\/f101g.org\/nl\/toegang-tot-geneesmiddelen-in-de-context-van-zeldzame-ziekten-door-prof-dr-g-m-b-sandy-tubeuf-en-romain-alderweireldt\/\" \/>\n<meta property=\"og:locale\" content=\"nl_BE\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"&quot;Toegang tot geneesmiddelen in de context van zeldzame ziekten&quot; door Prof. Dr. G. M. B. 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