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id="content" class="site-content"> <div class="wrap"> <div id="primary" class="content-area"> <main id="main" class="site-main"> <article id="post-56447" class="post-56447 page type-page status-publish hentry"> <header class="entry-header"> <h1 class="entry-title">Pati毛nteninformatiedag Gentherapie</h1> </header> <div class="entry-content"> <p><strong>Voorgaande bijeenkomst(en)</strong></p> <p>De Nederlandse Vereniging Gen- en celtherapie (NVGCT) organiseerde in samenwerking met de VSOP en Spierziekten Nederland een informatiemiddag voor pati毛ntvertegenwoordigers op <strong>15 juni 2022</strong>. Dit jaar was de bijeenkomst voor het eerst fysiek en onderdeel van het jaarlijkse NVGCT symposium. Er werden presentaties gegeven door <em>Prof. dr. Rob Collin</em> over het Dutch Center for RNA therapeutics, <span style="text-decoration: underline;">Jan Benedictus</span> over het pati毛ntenplatform gen- en celtherapie, en <em>Ria de Haas</em> over de weg naar de eerste gentherapie voor een spierziekte. Na een koffiepauze werd er vervolgens nog een Keynote lecture (in het Engels) gegeven door <em>Dr. Sabine Fuchs</em>, Kinderarts Metabole Ziekten bij het UMC Utrecht.</p> <hr class="wp-block-separator has-alpha-channel-opacity"/> <p>Op <strong>30 juni 2021</strong> organiseerde de NVGCT, in samenwerking met de VSOP, een tweede online informatiemiddag voor pati毛nten (organisaties). </p> <p>De eerste presentatie ging over<strong> </strong>de lysosomale stapelingsziekte metachromatische leukodystrofie聽(MLD). Het recent geregistreerde gentherapie product Libmeldy is een lentivirale gecombineerde cel- en gentherapie is ge茂ndiceerd voor de behandeling van kinderen met metachromatische leukodystrofie (MLD) gekenmerkt door bi-allelische mutaties in het arylsulfatase A-gen (ARSA-gen). De eerste presentatie was een duo-presentatie van<strong> </strong><em>Dr. Nicole Wolf</em><strong> </strong>en <em>Drs. Daphne Schoenmakers</em> van het AmsterdamUMC.</p> <p><em>Dr. Nicole Wolf</em> vertelde over het ziektebeeld MLD en de behandeling. Er is geen zoom opname gemaakt van haar presentatie. Het PDF document van haar Powerpoint presentatie kunt u <a rel="noreferrer noopener" href="https://www.nvgct.nl/wp-content/uploads/2021/08/Nicole-Wolf-Amsterdam-Leukodystrofie-centrum.pdf" target="_blank">hier </a>vinden.</p> <p><em>Drs. Daphne Schoenmakers</em>,<strong> </strong>verzorgde een presentatie over het belang van registers bij gentherapie bij metachromatische leukodystrofie en de totstandkoming van het mldinitiative.com. De Zoom opname van haar presentatie vindt u hieronder.<br>De video duurt in het totaal 23 minuten, waarvan eerste 10 minuten presentatie en daarna 13 minuten discussie.</p> <figure class="wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio"><div class="wp-block-embed__wrapper"> <iframe title="Pati毛nteninformatiedag NVGCT 2021" width="740" height="416" src="https://www.youtube.com/embed/DC143khSync?feature=oembed" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen></iframe> </div></figure> <p>De tweede presentatie ging over de bloedziekte hemofilie en de toepassing van AAV gentherapie.<strong> </strong><em>Prof. dr. Frank Leebeek</em>, ErasmusMC<strong>聽 </strong>verzorgde de lezing “Gentherapie voor hemofilie: Genezing nabij! of ?” met speciale bijdrage van Kenneth, een deelnemer aan een gentherapie trial. Voor hemofilie zijn diverse gentherapie producten in ontwikkeling en er zijn al een flink aantal pati毛nten behandeld in de klinische trials en daarmee ook diverse lessen geleerd over AAV gentherapie毛n.<br>De zoom opname duurt totaal 54 minuten, waarvan de eerste 32 minuten presentatie, gevolgd door 12 minuten gesprek met Kenneth en de laatste 10 minuten beantwoording van vragen van het publiek.</p> <figure class="wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio"><div class="wp-block-embed__wrapper"> <iframe loading="lazy" title="Patientenmiddag deel 2" width="740" height="416" src="https://www.youtube.com/embed/AfI0xlSWHQ4?feature=oembed" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen></iframe> </div></figure> <p>Derde onderdeel van de middag was een Paneldiscussie o.l.v.聽 <em>Mariette Driessens</em>, (VSOP) m.m.v. <em>Lonneke Timmers</em>, (Zorginstituut), <em>Floris Logman</em> (Menzis), <em>Hanka Dekker</em> (Pati毛ntenvereniging Volwassenen, Kinderen en Stofwisselingsziekten) en <em>Gerard Wagemaker</em> (NVCGT) over de ervaringen met vergoeding van gentherapie behandelingen tot nu toe en de vraagstukken voor de toekomst. Een kort verslag leest u <a rel="noreferrer noopener" href="https://www.nvgct.nl/wp-content/uploads/2021/08/panel-discussie-patientenmiddag-30-6-2021-NVGCT.pdf" target="_blank">hier.</a></p> <hr class="wp-block-separator has-alpha-channel-opacity"/> <p>Op <strong>28 oktober 2020</strong> heeft de NVGCT in samenwerking met de VSOP & NFK een online vraaggesprek over gentherapie georganiseerd voor pati毛nten (organisaties). Het verslag van dit vraaggesprek alsmede de presentatie die is gegeven door dr. <em>Carla Herberts </em>zijn hier na te lezen/kijken.</p> <figure class="wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio"><div class="wp-block-embed__wrapper"> <iframe loading="lazy" title="Carla Herberts" width="740" height="416" src="https://www.youtube.com/embed/ulPcopUSds4?feature=oembed" frameborder="0" allow="accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture" allowfullscreen></iframe> </div></figure> <a href="https://www.nvgct.nl/wp-content/uploads/2020/12/verslag-patientenmiddag-28-10-2020-NVGCT-002.pdf" class="pdfemb-viewer" style="" data-width="max" data-height="max" data-toolbar="top" data-toolbar-fixed="on">verslag-patientenmiddag-28-10-2020-NVGCT-002</a> <p class="wp-block-pdfemb-pdf-embedder-viewer"></p> <p></p> </div> </article> </main> </div> </div> </div> <footer id="colophon" 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