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data-element_type="column"> <div class="elementor-widget-wrap elementor-element-populated"> <div class="elementor-element elementor-element-a860a23 elementor-nav-menu__align-center elementor-nav-menu--stretch elementor-nav-menu--dropdown-tablet elementor-nav-menu__text-align-aside elementor-nav-menu--toggle elementor-nav-menu--burger elementor-widget elementor-widget-nav-menu" data-id="a860a23" data-element_type="widget" data-settings="{"submenu_icon":{"value":"<i class=\"fas fa-chevron-down\"><\/i>","library":"fa-solid"},"full_width":"stretch","layout":"horizontal","toggle":"burger"}" data-widget_type="nav-menu.default"> <div class="elementor-widget-container"> <nav class="elementor-nav-menu--main elementor-nav-menu__container elementor-nav-menu--layout-horizontal e--pointer-none"> <ul id="menu-1-a860a23" class="elementor-nav-menu"><li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-715"><a class="elementor-item">Over EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-716"><a href="https://vlinderkind.nl/wat-is-eb/" class="elementor-sub-item">Wat is EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-722"><a href="https://vlinderkind.nl/hoe-krijg-je-eb/" class="elementor-sub-item">Hoe krijg je EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-737"><a href="https://vlinderkind.nl/vormen-van-eb/" class="elementor-sub-item">Vormen van EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-1879"><a href="https://vlinderkind.nl/eb-simplex/" class="elementor-sub-item">EB Simplex</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-1893"><a href="https://vlinderkind.nl/junctioneel-eb/" class="elementor-sub-item">Junctioneel EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-1905"><a href="https://vlinderkind.nl/dystrofische-eb/" class="elementor-sub-item">Dystrofische EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-1919"><a href="https://vlinderkind.nl/kindlersyndroom/" class="elementor-sub-item">Kindlersyndroom</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-736"><a href="https://vlinderkind.nl/wat-kun-je-eraan-doen/" class="elementor-sub-item">Wat kun je eraan doen?</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-760"><a class="elementor-item">Help mee</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2921"><a href="https://vlinderkind.nl/doneer/" class="elementor-sub-item">Doneer</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2592"><a href="https://vlinderkind.nl/kom-in-actie/" class="elementor-sub-item">Kom in actie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2801"><a href="https://vlinderkind.nl/belastingvrij-schenken/" class="elementor-sub-item">Belastingvrij schenken</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-761"><a href="https://vlinderkind.nl/schenking-en-nalatenschap/" class="elementor-sub-item">Schenking en nalatenschap</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2802"><a href="https://vlinderkind.nl/online-collecte/" class="elementor-sub-item">Online collecte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-763"><a href="https://vlinderkind.nl/bedrijven/" class="elementor-sub-item">Bedrijven</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-762"><a href="https://vlinderkind.nl/scholen/" class="elementor-sub-item">Scholen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2219"><a href="https://vlinderkind.nl/statiegeldactie/" class="elementor-sub-item">Statiegeldactie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-764"><a href="https://vlinderkind.nl/vrijwillgerswerk/" class="elementor-sub-item">Vrijwillgerswerk</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3667"><a class="elementor-item">Vlinderkinderen</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3673"><a href="https://vlinderkind.nl/vlinderkind/" class="elementor-sub-item">Vlinderkind</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3672"><a href="https://vlinderkind.nl/lotgenotencontact/" class="elementor-sub-item">Lotgenotencontact</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-767"><a class="elementor-item">Over ons</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-772"><a href="https://vlinderkind.nl/oorsprong-en-doelstelling/" class="elementor-sub-item">Oorsprong en doelstelling</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-964"><a href="https://vlinderkind.nl/bestuur/" class="elementor-sub-item">Organisatie</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-2372"><a href="https://vlinderkind.nl/?jet_download=2368" class="elementor-sub-item">Bestuur</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-771"><a href="https://vlinderkind.nl/beleidsplannen/" class="elementor-sub-item">Beleidsplannen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-770"><a href="https://vlinderkind.nl/jaarverslagen-en-begrotingen/" class="elementor-sub-item">Jaarverslagen en begrotingen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-769"><a href="https://vlinderkind.nl/integriteitsbeleid/" class="elementor-sub-item">Integriteitsbeleid</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-768"><a href="https://vlinderkind.nl/onze-erkenningen/" class="elementor-sub-item">Onze erkenningen</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-ancestor current-menu-parent current_page_parent current_page_ancestor menu-item-has-children menu-item-2313"><a href="https://vlinderkind.nl/team/" class="elementor-item">Onderzoek</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2444"><a href="https://vlinderkind.nl/subsidie-aanvragen/" class="elementor-sub-item">Subsidie aanvragen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2447"><a href="https://vlinderkind.nl/financiering-onderzoek/" class="elementor-sub-item">Gefinancierd onderzoek</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-item page_item page-item-4374 current_page_item menu-item-4386"><a href="https://vlinderkind.nl/de-weg-naar-een-eb-diagnose/" aria-current="page" class="elementor-sub-item elementor-item-active">De weg naar een EB diagnose</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4398"><a href="https://vlinderkind.nl/coseb/" class="elementor-sub-item">COSEB</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-4099"><a href="https://vlinderkind.nl/campagne-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-item">Campagne: Vlinderziekte</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-4003"><a href="https://vlinderkind.nl/persbericht-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-sub-item">Campagne Persbericht</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4242"><a href="https://vlinderkind.nl/qa-campagne-vlinderziekte/" class="elementor-sub-item">Q&A Campagne Vlinderziekte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4028"><a href="https://vlinderkind.nl/artikel-wendy-van-teeffelen/" class="elementor-sub-item">Artikel Wendy van Teeffelen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4083"><a href="https://vlinderkind.nl/campagne-materiaal/" class="elementor-sub-item">Campagne Materiaal</a></li> </ul> </li> </ul> </nav> <div class="elementor-menu-toggle" role="button" tabindex="0" aria-label="Menu toggle" aria-expanded="false"> <i aria-hidden="true" role="presentation" class="elementor-menu-toggle__icon--open eicon-menu-bar"></i><i aria-hidden="true" role="presentation" class="elementor-menu-toggle__icon--close eicon-close"></i> <span class="elementor-screen-only">Menu</span> </div> <nav class="elementor-nav-menu--dropdown elementor-nav-menu__container" aria-hidden="true"> <ul id="menu-2-a860a23" class="elementor-nav-menu"><li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-715"><a class="elementor-item" tabindex="-1">Over EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-716"><a href="https://vlinderkind.nl/wat-is-eb/" class="elementor-sub-item" tabindex="-1">Wat is EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-722"><a href="https://vlinderkind.nl/hoe-krijg-je-eb/" class="elementor-sub-item" tabindex="-1">Hoe krijg je EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-737"><a href="https://vlinderkind.nl/vormen-van-eb/" class="elementor-sub-item" tabindex="-1">Vormen van EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-1879"><a href="https://vlinderkind.nl/eb-simplex/" class="elementor-sub-item" tabindex="-1">EB Simplex</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-1893"><a href="https://vlinderkind.nl/junctioneel-eb/" class="elementor-sub-item" tabindex="-1">Junctioneel EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-1905"><a href="https://vlinderkind.nl/dystrofische-eb/" class="elementor-sub-item" tabindex="-1">Dystrofische EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-1919"><a href="https://vlinderkind.nl/kindlersyndroom/" class="elementor-sub-item" tabindex="-1">Kindlersyndroom</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-736"><a href="https://vlinderkind.nl/wat-kun-je-eraan-doen/" class="elementor-sub-item" tabindex="-1">Wat kun je eraan doen?</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-760"><a class="elementor-item" tabindex="-1">Help mee</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2921"><a href="https://vlinderkind.nl/doneer/" class="elementor-sub-item" tabindex="-1">Doneer</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2592"><a href="https://vlinderkind.nl/kom-in-actie/" class="elementor-sub-item" tabindex="-1">Kom in actie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2801"><a href="https://vlinderkind.nl/belastingvrij-schenken/" class="elementor-sub-item" tabindex="-1">Belastingvrij schenken</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-761"><a href="https://vlinderkind.nl/schenking-en-nalatenschap/" class="elementor-sub-item" tabindex="-1">Schenking en nalatenschap</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2802"><a href="https://vlinderkind.nl/online-collecte/" class="elementor-sub-item" tabindex="-1">Online collecte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-763"><a href="https://vlinderkind.nl/bedrijven/" class="elementor-sub-item" tabindex="-1">Bedrijven</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-762"><a href="https://vlinderkind.nl/scholen/" class="elementor-sub-item" tabindex="-1">Scholen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2219"><a href="https://vlinderkind.nl/statiegeldactie/" class="elementor-sub-item" tabindex="-1">Statiegeldactie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-764"><a href="https://vlinderkind.nl/vrijwillgerswerk/" class="elementor-sub-item" tabindex="-1">Vrijwillgerswerk</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3667"><a class="elementor-item" tabindex="-1">Vlinderkinderen</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3673"><a href="https://vlinderkind.nl/vlinderkind/" class="elementor-sub-item" tabindex="-1">Vlinderkind</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3672"><a href="https://vlinderkind.nl/lotgenotencontact/" class="elementor-sub-item" tabindex="-1">Lotgenotencontact</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-767"><a class="elementor-item" tabindex="-1">Over ons</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-772"><a href="https://vlinderkind.nl/oorsprong-en-doelstelling/" class="elementor-sub-item" tabindex="-1">Oorsprong en doelstelling</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-964"><a href="https://vlinderkind.nl/bestuur/" class="elementor-sub-item" tabindex="-1">Organisatie</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-2372"><a href="https://vlinderkind.nl/?jet_download=2368" class="elementor-sub-item" tabindex="-1">Bestuur</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-771"><a href="https://vlinderkind.nl/beleidsplannen/" class="elementor-sub-item" tabindex="-1">Beleidsplannen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-770"><a href="https://vlinderkind.nl/jaarverslagen-en-begrotingen/" class="elementor-sub-item" tabindex="-1">Jaarverslagen en begrotingen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-769"><a href="https://vlinderkind.nl/integriteitsbeleid/" class="elementor-sub-item" tabindex="-1">Integriteitsbeleid</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-768"><a href="https://vlinderkind.nl/onze-erkenningen/" class="elementor-sub-item" tabindex="-1">Onze erkenningen</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-ancestor current-menu-parent current_page_parent current_page_ancestor menu-item-has-children menu-item-2313"><a href="https://vlinderkind.nl/team/" class="elementor-item" tabindex="-1">Onderzoek</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2444"><a href="https://vlinderkind.nl/subsidie-aanvragen/" class="elementor-sub-item" tabindex="-1">Subsidie aanvragen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-2447"><a href="https://vlinderkind.nl/financiering-onderzoek/" class="elementor-sub-item" tabindex="-1">Gefinancierd onderzoek</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-item page_item page-item-4374 current_page_item menu-item-4386"><a href="https://vlinderkind.nl/de-weg-naar-een-eb-diagnose/" aria-current="page" class="elementor-sub-item elementor-item-active" tabindex="-1">De weg naar een EB diagnose</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4398"><a href="https://vlinderkind.nl/coseb/" class="elementor-sub-item" tabindex="-1">COSEB</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-4099"><a href="https://vlinderkind.nl/campagne-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-item" tabindex="-1">Campagne: Vlinderziekte</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-4003"><a href="https://vlinderkind.nl/persbericht-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-sub-item" tabindex="-1">Campagne Persbericht</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4242"><a href="https://vlinderkind.nl/qa-campagne-vlinderziekte/" class="elementor-sub-item" tabindex="-1">Q&A Campagne Vlinderziekte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4028"><a href="https://vlinderkind.nl/artikel-wendy-van-teeffelen/" class="elementor-sub-item" tabindex="-1">Artikel Wendy van Teeffelen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4083"><a href="https://vlinderkind.nl/campagne-materiaal/" class="elementor-sub-item" tabindex="-1">Campagne Materiaal</a></li> </ul> </li> </ul> </nav> </div> </div> </div> </div> <div class="elementor-column elementor-col-33 elementor-top-column elementor-element elementor-element-75b9bec" data-id="75b9bec" data-element_type="column"> <div class="elementor-widget-wrap elementor-element-populated"> <div class="elementor-element elementor-element-80cb03e elementor-align-justify elementor-mobile-align-center elementor-widget elementor-widget-button" data-id="80cb03e" data-element_type="widget" data-widget_type="button.default"> <div class="elementor-widget-container"> <div class="elementor-button-wrapper"> <a class="elementor-button elementor-button-link elementor-size-sm elementor-animation-shrink" href="https://vlinderkind.nl/doneer/"> <span class="elementor-button-content-wrapper"> <span class="elementor-button-text">doneer</span> </span> </a> </div> </div> </div> </div> </div> </div> </section> <section class="elementor-section elementor-top-section elementor-element elementor-element-ef7affa elementor-hidden-mobile elementor-hidden-desktop elementor-section-boxed elementor-section-height-default elementor-section-height-default" data-id="ef7affa" data-element_type="section" data-settings="{"background_background":"classic","jet_parallax_layout_list":[],"sticky":"top","sticky_on":["desktop"],"sticky_offset":0,"sticky_effects_offset":0}"> <div class="elementor-container elementor-column-gap-default"> <div class="elementor-column elementor-col-33 elementor-top-column elementor-element elementor-element-b60fa17" data-id="b60fa17" data-element_type="column"> <div class="elementor-widget-wrap elementor-element-populated"> <div class="elementor-element elementor-element-2384d8f elementor-widget elementor-widget-theme-site-logo elementor-widget-image" data-id="2384d8f" data-element_type="widget" data-widget_type="theme-site-logo.default"> <div class="elementor-widget-container"> <a href="https://vlinderkind.nl"> <img width="300" height="100" src="data:image/svg+xml,%3Csvg%20xmlns='http://www.w3.org/2000/svg'%20viewBox='0%200%20300%20100'%3E%3C/svg%3E" class="attachment-full size-full wp-image-624" alt="Stichting Vlinderkind" data-lazy-src="https://vlinderkind.nl/wp-content/uploads/2023/03/vlinderkind-logo.png" /><noscript><img width="300" height="100" src="https://vlinderkind.nl/wp-content/uploads/2023/03/vlinderkind-logo.png" class="attachment-full size-full wp-image-624" alt="Stichting Vlinderkind" /></noscript> </a> </div> </div> </div> </div> <div class="elementor-column elementor-col-33 elementor-top-column elementor-element elementor-element-a649426" data-id="a649426" data-element_type="column"> <div class="elementor-widget-wrap elementor-element-populated"> <div class="elementor-element elementor-element-e0c63cc elementor-nav-menu__align-center elementor-nav-menu--stretch elementor-nav-menu--dropdown-tablet elementor-nav-menu__text-align-aside elementor-nav-menu--toggle elementor-nav-menu--burger elementor-widget elementor-widget-nav-menu" data-id="e0c63cc" data-element_type="widget" data-settings="{"submenu_icon":{"value":"<i class=\"fas fa-chevron-down\"><\/i>","library":"fa-solid"},"full_width":"stretch","layout":"horizontal","toggle":"burger"}" data-widget_type="nav-menu.default"> <div class="elementor-widget-container"> <nav class="elementor-nav-menu--main elementor-nav-menu__container elementor-nav-menu--layout-horizontal e--pointer-none"> <ul id="menu-1-e0c63cc" class="elementor-nav-menu"><li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-4100"><a href="https://vlinderkind.nl/campagne-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-item">Campagne: Vlinderziekte</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-4030"><a href="https://vlinderkind.nl/persbericht-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-sub-item">Campagne Persbericht</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4243"><a href="https://vlinderkind.nl/qa-campagne-vlinderziekte/" class="elementor-sub-item">Q&A Campagne Vlinderziekte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4029"><a href="https://vlinderkind.nl/artikel-wendy-van-teeffelen/" class="elementor-sub-item">Artikel Wendy van Teeffelen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4082"><a href="https://vlinderkind.nl/campagne-materiaal/" class="elementor-sub-item">Campagne Materiaal</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3958"><a class="elementor-item">Over EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3959"><a href="https://vlinderkind.nl/wat-is-eb/" class="elementor-sub-item">Wat is EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3961"><a href="https://vlinderkind.nl/hoe-krijg-je-eb/" class="elementor-sub-item">Hoe krijg je EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-3960"><a href="https://vlinderkind.nl/vormen-van-eb/" class="elementor-sub-item">Vormen van EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3962"><a href="https://vlinderkind.nl/eb-simplex/" class="elementor-sub-item">EB Simplex</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3963"><a href="https://vlinderkind.nl/junctioneel-eb/" class="elementor-sub-item">Junctioneel EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3964"><a href="https://vlinderkind.nl/dystrofische-eb/" class="elementor-sub-item">Dystrofische EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3965"><a href="https://vlinderkind.nl/kindlersyndroom/" class="elementor-sub-item">Kindlersyndroom</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3966"><a href="https://vlinderkind.nl/wat-kun-je-eraan-doen/" class="elementor-sub-item">Wat kun je eraan doen?</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3967"><a class="elementor-item">Help mee</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3968"><a href="https://vlinderkind.nl/doneer/" class="elementor-sub-item">Doneer</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3969"><a href="https://vlinderkind.nl/kom-in-actie/" class="elementor-sub-item">Kom in actie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3970"><a href="https://vlinderkind.nl/belastingvrij-schenken/" class="elementor-sub-item">Belastingvrij schenken</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3971"><a href="https://vlinderkind.nl/online-collecte/" class="elementor-sub-item">Online collecte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3972"><a href="https://vlinderkind.nl/bedrijven/" class="elementor-sub-item">Bedrijven</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3973"><a href="https://vlinderkind.nl/scholen/" class="elementor-sub-item">Scholen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3974"><a href="https://vlinderkind.nl/statiegeldactie/" class="elementor-sub-item">Statiegeldactie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3975"><a href="https://vlinderkind.nl/vrijwillgerswerk/" class="elementor-sub-item">Vrijwillgerswerk</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3976"><a class="elementor-item">Vlinderkinderen</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3978"><a href="https://vlinderkind.nl/vlinderkind/" class="elementor-sub-item">Vlinderkind</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3977"><a href="https://vlinderkind.nl/lotgenotencontact/" class="elementor-sub-item">Lotgenotencontact</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3979"><a class="elementor-item">Over Ons</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3980"><a href="https://vlinderkind.nl/oorsprong-en-doelstelling/" class="elementor-sub-item">Oorsprong en doelstelling</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-3981"><a href="https://vlinderkind.nl/bestuur/" class="elementor-sub-item">Organisatie</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-3983"><a href="https://vlinderkind.nl/?jet_download=2368" class="elementor-sub-item">Bestuur</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3984"><a href="https://vlinderkind.nl/beleidsplannen/" class="elementor-sub-item">Beleidsplannen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3985"><a href="https://vlinderkind.nl/jaarverslagen-en-begrotingen/" class="elementor-sub-item">Jaarverslagen en begrotingen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3982"><a href="https://vlinderkind.nl/integriteitsbeleid/" class="elementor-sub-item">Integriteitsbeleid</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3986"><a href="https://vlinderkind.nl/onze-erkenningen/" class="elementor-sub-item">Onze erkenningen</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-ancestor current-menu-parent current_page_parent current_page_ancestor menu-item-has-children menu-item-3988"><a href="https://vlinderkind.nl/team/" class="elementor-item">Onderzoek</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3990"><a href="https://vlinderkind.nl/subsidie-aanvragen/" class="elementor-sub-item">Subsidie aanvragen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3989"><a href="https://vlinderkind.nl/financiering-onderzoek/" class="elementor-sub-item">Gefinancierd onderzoek</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-item page_item page-item-4374 current_page_item menu-item-4388"><a href="https://vlinderkind.nl/de-weg-naar-een-eb-diagnose/" aria-current="page" class="elementor-sub-item elementor-item-active">De weg naar een EB diagnose</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4397"><a href="https://vlinderkind.nl/coseb/" class="elementor-sub-item">COSEB</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3991"><a class="elementor-item">Media en informatie</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3995"><a href="https://vlinderkind.nl/actueel/" class="elementor-sub-item">Nieuws van Vlinderkind</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3994"><a href="https://vlinderkind.nl/folders-en-brochures/" class="elementor-sub-item">Folders en brochures</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3993"><a href="https://vlinderkind.nl/voor-de-pers/" class="elementor-sub-item">Voor de pers</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3992"><a href="https://vlinderkind.nl/materiaal/" class="elementor-sub-item">Materiaal</a></li> </ul> </li> </ul> </nav> <div class="elementor-menu-toggle" role="button" tabindex="0" aria-label="Menu toggle" aria-expanded="false"> <i aria-hidden="true" role="presentation" class="elementor-menu-toggle__icon--open eicon-menu-bar"></i><i aria-hidden="true" role="presentation" class="elementor-menu-toggle__icon--close eicon-close"></i> <span class="elementor-screen-only">Menu</span> </div> <nav class="elementor-nav-menu--dropdown elementor-nav-menu__container" aria-hidden="true"> <ul id="menu-2-e0c63cc" class="elementor-nav-menu"><li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-4100"><a href="https://vlinderkind.nl/campagne-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-item" tabindex="-1">Campagne: Vlinderziekte</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-4030"><a href="https://vlinderkind.nl/persbericht-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-sub-item" tabindex="-1">Campagne Persbericht</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4243"><a href="https://vlinderkind.nl/qa-campagne-vlinderziekte/" class="elementor-sub-item" tabindex="-1">Q&A Campagne Vlinderziekte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4029"><a href="https://vlinderkind.nl/artikel-wendy-van-teeffelen/" class="elementor-sub-item" tabindex="-1">Artikel Wendy van Teeffelen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4082"><a href="https://vlinderkind.nl/campagne-materiaal/" class="elementor-sub-item" tabindex="-1">Campagne Materiaal</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3958"><a class="elementor-item" tabindex="-1">Over EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3959"><a href="https://vlinderkind.nl/wat-is-eb/" class="elementor-sub-item" tabindex="-1">Wat is EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3961"><a href="https://vlinderkind.nl/hoe-krijg-je-eb/" class="elementor-sub-item" tabindex="-1">Hoe krijg je EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-3960"><a href="https://vlinderkind.nl/vormen-van-eb/" class="elementor-sub-item" tabindex="-1">Vormen van EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3962"><a href="https://vlinderkind.nl/eb-simplex/" class="elementor-sub-item" tabindex="-1">EB Simplex</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3963"><a href="https://vlinderkind.nl/junctioneel-eb/" class="elementor-sub-item" tabindex="-1">Junctioneel EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3964"><a href="https://vlinderkind.nl/dystrofische-eb/" class="elementor-sub-item" tabindex="-1">Dystrofische EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3965"><a href="https://vlinderkind.nl/kindlersyndroom/" class="elementor-sub-item" tabindex="-1">Kindlersyndroom</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3966"><a href="https://vlinderkind.nl/wat-kun-je-eraan-doen/" class="elementor-sub-item" tabindex="-1">Wat kun je eraan doen?</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3967"><a class="elementor-item" tabindex="-1">Help mee</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3968"><a href="https://vlinderkind.nl/doneer/" class="elementor-sub-item" tabindex="-1">Doneer</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3969"><a href="https://vlinderkind.nl/kom-in-actie/" class="elementor-sub-item" tabindex="-1">Kom in actie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3970"><a href="https://vlinderkind.nl/belastingvrij-schenken/" class="elementor-sub-item" tabindex="-1">Belastingvrij schenken</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3971"><a href="https://vlinderkind.nl/online-collecte/" class="elementor-sub-item" tabindex="-1">Online collecte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3972"><a href="https://vlinderkind.nl/bedrijven/" class="elementor-sub-item" tabindex="-1">Bedrijven</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3973"><a href="https://vlinderkind.nl/scholen/" class="elementor-sub-item" tabindex="-1">Scholen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3974"><a href="https://vlinderkind.nl/statiegeldactie/" class="elementor-sub-item" tabindex="-1">Statiegeldactie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3975"><a href="https://vlinderkind.nl/vrijwillgerswerk/" class="elementor-sub-item" tabindex="-1">Vrijwillgerswerk</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3976"><a class="elementor-item" tabindex="-1">Vlinderkinderen</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3978"><a href="https://vlinderkind.nl/vlinderkind/" class="elementor-sub-item" tabindex="-1">Vlinderkind</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3977"><a href="https://vlinderkind.nl/lotgenotencontact/" class="elementor-sub-item" tabindex="-1">Lotgenotencontact</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3979"><a class="elementor-item" tabindex="-1">Over Ons</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3980"><a href="https://vlinderkind.nl/oorsprong-en-doelstelling/" class="elementor-sub-item" tabindex="-1">Oorsprong en doelstelling</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-3981"><a href="https://vlinderkind.nl/bestuur/" class="elementor-sub-item" tabindex="-1">Organisatie</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-3983"><a href="https://vlinderkind.nl/?jet_download=2368" class="elementor-sub-item" tabindex="-1">Bestuur</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3984"><a href="https://vlinderkind.nl/beleidsplannen/" class="elementor-sub-item" tabindex="-1">Beleidsplannen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3985"><a href="https://vlinderkind.nl/jaarverslagen-en-begrotingen/" class="elementor-sub-item" tabindex="-1">Jaarverslagen en begrotingen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3982"><a href="https://vlinderkind.nl/integriteitsbeleid/" class="elementor-sub-item" tabindex="-1">Integriteitsbeleid</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3986"><a href="https://vlinderkind.nl/onze-erkenningen/" class="elementor-sub-item" tabindex="-1">Onze erkenningen</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-ancestor current-menu-parent current_page_parent current_page_ancestor menu-item-has-children menu-item-3988"><a href="https://vlinderkind.nl/team/" class="elementor-item" tabindex="-1">Onderzoek</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3990"><a href="https://vlinderkind.nl/subsidie-aanvragen/" class="elementor-sub-item" tabindex="-1">Subsidie aanvragen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3989"><a href="https://vlinderkind.nl/financiering-onderzoek/" class="elementor-sub-item" tabindex="-1">Gefinancierd onderzoek</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-item page_item page-item-4374 current_page_item menu-item-4388"><a href="https://vlinderkind.nl/de-weg-naar-een-eb-diagnose/" aria-current="page" class="elementor-sub-item elementor-item-active" tabindex="-1">De weg naar een EB diagnose</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4397"><a href="https://vlinderkind.nl/coseb/" class="elementor-sub-item" tabindex="-1">COSEB</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3991"><a class="elementor-item" tabindex="-1">Media en informatie</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3995"><a href="https://vlinderkind.nl/actueel/" class="elementor-sub-item" tabindex="-1">Nieuws van Vlinderkind</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3994"><a href="https://vlinderkind.nl/folders-en-brochures/" class="elementor-sub-item" tabindex="-1">Folders en brochures</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3993"><a href="https://vlinderkind.nl/voor-de-pers/" class="elementor-sub-item" tabindex="-1">Voor de pers</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3992"><a href="https://vlinderkind.nl/materiaal/" class="elementor-sub-item" tabindex="-1">Materiaal</a></li> </ul> </li> </ul> </nav> </div> </div> </div> </div> <div class="elementor-column elementor-col-33 elementor-top-column elementor-element elementor-element-f9b9fb7" data-id="f9b9fb7" data-element_type="column"> <div class="elementor-widget-wrap elementor-element-populated"> <div class="elementor-element elementor-element-97fa3b1 elementor-align-justify elementor-mobile-align-center elementor-widget elementor-widget-button" data-id="97fa3b1" data-element_type="widget" data-widget_type="button.default"> <div class="elementor-widget-container"> <div class="elementor-button-wrapper"> <a class="elementor-button elementor-button-link elementor-size-sm elementor-animation-shrink" href="https://vlinderkind.nl/doneer/"> <span class="elementor-button-content-wrapper"> <span class="elementor-button-text">doneer</span> </span> </a> </div> </div> </div> </div> </div> </div> </section> <section class="elementor-section elementor-top-section elementor-element elementor-element-f3d2c0b elementor-hidden-desktop elementor-hidden-tablet elementor-section-boxed elementor-section-height-default elementor-section-height-default" data-id="f3d2c0b" data-element_type="section" data-settings="{"background_background":"classic","sticky":"top","jet_parallax_layout_list":[],"sticky_on":["desktop","tablet","mobile"],"sticky_offset":0,"sticky_effects_offset":0}"> <div class="elementor-container elementor-column-gap-default"> <div class="elementor-column elementor-col-33 elementor-top-column elementor-element elementor-element-5ef8335" data-id="5ef8335" data-element_type="column"> <div class="elementor-widget-wrap elementor-element-populated"> <div class="elementor-element elementor-element-7dd6524 elementor-nav-menu__align-start elementor-nav-menu--stretch elementor-nav-menu--dropdown-tablet elementor-nav-menu__text-align-aside elementor-nav-menu--toggle elementor-nav-menu--burger elementor-widget elementor-widget-nav-menu" data-id="7dd6524" data-element_type="widget" data-settings="{"submenu_icon":{"value":"<i class=\"fas fa-chevron-down\"><\/i>","library":"fa-solid"},"full_width":"stretch","layout":"horizontal","toggle":"burger"}" data-widget_type="nav-menu.default"> <div class="elementor-widget-container"> <nav class="elementor-nav-menu--main elementor-nav-menu__container elementor-nav-menu--layout-horizontal e--pointer-none"> <ul id="menu-1-7dd6524" class="elementor-nav-menu"><li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-4100"><a href="https://vlinderkind.nl/campagne-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-item">Campagne: Vlinderziekte</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-4030"><a href="https://vlinderkind.nl/persbericht-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-sub-item">Campagne Persbericht</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4243"><a href="https://vlinderkind.nl/qa-campagne-vlinderziekte/" class="elementor-sub-item">Q&A Campagne Vlinderziekte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4029"><a href="https://vlinderkind.nl/artikel-wendy-van-teeffelen/" class="elementor-sub-item">Artikel Wendy van Teeffelen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4082"><a href="https://vlinderkind.nl/campagne-materiaal/" class="elementor-sub-item">Campagne Materiaal</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3958"><a class="elementor-item">Over EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3959"><a href="https://vlinderkind.nl/wat-is-eb/" class="elementor-sub-item">Wat is EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3961"><a href="https://vlinderkind.nl/hoe-krijg-je-eb/" class="elementor-sub-item">Hoe krijg je EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-3960"><a href="https://vlinderkind.nl/vormen-van-eb/" class="elementor-sub-item">Vormen van EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3962"><a href="https://vlinderkind.nl/eb-simplex/" class="elementor-sub-item">EB Simplex</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3963"><a href="https://vlinderkind.nl/junctioneel-eb/" class="elementor-sub-item">Junctioneel EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3964"><a href="https://vlinderkind.nl/dystrofische-eb/" class="elementor-sub-item">Dystrofische EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3965"><a href="https://vlinderkind.nl/kindlersyndroom/" class="elementor-sub-item">Kindlersyndroom</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3966"><a href="https://vlinderkind.nl/wat-kun-je-eraan-doen/" class="elementor-sub-item">Wat kun je eraan doen?</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3967"><a class="elementor-item">Help mee</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3968"><a href="https://vlinderkind.nl/doneer/" class="elementor-sub-item">Doneer</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3969"><a href="https://vlinderkind.nl/kom-in-actie/" class="elementor-sub-item">Kom in actie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3970"><a href="https://vlinderkind.nl/belastingvrij-schenken/" class="elementor-sub-item">Belastingvrij schenken</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3971"><a href="https://vlinderkind.nl/online-collecte/" class="elementor-sub-item">Online collecte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3972"><a href="https://vlinderkind.nl/bedrijven/" class="elementor-sub-item">Bedrijven</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3973"><a href="https://vlinderkind.nl/scholen/" class="elementor-sub-item">Scholen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3974"><a href="https://vlinderkind.nl/statiegeldactie/" class="elementor-sub-item">Statiegeldactie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3975"><a href="https://vlinderkind.nl/vrijwillgerswerk/" class="elementor-sub-item">Vrijwillgerswerk</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3976"><a class="elementor-item">Vlinderkinderen</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3978"><a href="https://vlinderkind.nl/vlinderkind/" class="elementor-sub-item">Vlinderkind</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3977"><a href="https://vlinderkind.nl/lotgenotencontact/" class="elementor-sub-item">Lotgenotencontact</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3979"><a class="elementor-item">Over Ons</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3980"><a href="https://vlinderkind.nl/oorsprong-en-doelstelling/" class="elementor-sub-item">Oorsprong en doelstelling</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-3981"><a href="https://vlinderkind.nl/bestuur/" class="elementor-sub-item">Organisatie</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-3983"><a href="https://vlinderkind.nl/?jet_download=2368" class="elementor-sub-item">Bestuur</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3984"><a href="https://vlinderkind.nl/beleidsplannen/" class="elementor-sub-item">Beleidsplannen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3985"><a href="https://vlinderkind.nl/jaarverslagen-en-begrotingen/" class="elementor-sub-item">Jaarverslagen en begrotingen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3982"><a href="https://vlinderkind.nl/integriteitsbeleid/" class="elementor-sub-item">Integriteitsbeleid</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3986"><a href="https://vlinderkind.nl/onze-erkenningen/" class="elementor-sub-item">Onze erkenningen</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-ancestor current-menu-parent current_page_parent current_page_ancestor menu-item-has-children menu-item-3988"><a href="https://vlinderkind.nl/team/" class="elementor-item">Onderzoek</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3990"><a href="https://vlinderkind.nl/subsidie-aanvragen/" class="elementor-sub-item">Subsidie aanvragen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3989"><a href="https://vlinderkind.nl/financiering-onderzoek/" class="elementor-sub-item">Gefinancierd onderzoek</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-item page_item page-item-4374 current_page_item menu-item-4388"><a href="https://vlinderkind.nl/de-weg-naar-een-eb-diagnose/" aria-current="page" class="elementor-sub-item elementor-item-active">De weg naar een EB diagnose</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4397"><a href="https://vlinderkind.nl/coseb/" class="elementor-sub-item">COSEB</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3991"><a class="elementor-item">Media en informatie</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3995"><a href="https://vlinderkind.nl/actueel/" class="elementor-sub-item">Nieuws van Vlinderkind</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3994"><a href="https://vlinderkind.nl/folders-en-brochures/" class="elementor-sub-item">Folders en brochures</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3993"><a href="https://vlinderkind.nl/voor-de-pers/" class="elementor-sub-item">Voor de pers</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3992"><a href="https://vlinderkind.nl/materiaal/" class="elementor-sub-item">Materiaal</a></li> </ul> </li> </ul> </nav> <div class="elementor-menu-toggle" role="button" tabindex="0" aria-label="Menu toggle" aria-expanded="false"> <i aria-hidden="true" role="presentation" class="elementor-menu-toggle__icon--open eicon-menu-bar"></i><i aria-hidden="true" role="presentation" class="elementor-menu-toggle__icon--close eicon-close"></i> <span class="elementor-screen-only">Menu</span> </div> <nav class="elementor-nav-menu--dropdown elementor-nav-menu__container" aria-hidden="true"> <ul id="menu-2-7dd6524" class="elementor-nav-menu"><li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-4100"><a href="https://vlinderkind.nl/campagne-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-item" tabindex="-1">Campagne: Vlinderziekte</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-4030"><a href="https://vlinderkind.nl/persbericht-vlinderziekte-een-verschrikkelijke-kinderziekte/" class="elementor-sub-item" tabindex="-1">Campagne Persbericht</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4243"><a href="https://vlinderkind.nl/qa-campagne-vlinderziekte/" class="elementor-sub-item" tabindex="-1">Q&A Campagne Vlinderziekte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4029"><a href="https://vlinderkind.nl/artikel-wendy-van-teeffelen/" class="elementor-sub-item" tabindex="-1">Artikel Wendy van Teeffelen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4082"><a href="https://vlinderkind.nl/campagne-materiaal/" class="elementor-sub-item" tabindex="-1">Campagne Materiaal</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3958"><a class="elementor-item" tabindex="-1">Over EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3959"><a href="https://vlinderkind.nl/wat-is-eb/" class="elementor-sub-item" tabindex="-1">Wat is EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3961"><a href="https://vlinderkind.nl/hoe-krijg-je-eb/" class="elementor-sub-item" tabindex="-1">Hoe krijg je EB?</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-3960"><a href="https://vlinderkind.nl/vormen-van-eb/" class="elementor-sub-item" tabindex="-1">Vormen van EB</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3962"><a href="https://vlinderkind.nl/eb-simplex/" class="elementor-sub-item" tabindex="-1">EB Simplex</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3963"><a href="https://vlinderkind.nl/junctioneel-eb/" class="elementor-sub-item" tabindex="-1">Junctioneel EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3964"><a href="https://vlinderkind.nl/dystrofische-eb/" class="elementor-sub-item" tabindex="-1">Dystrofische EB</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3965"><a href="https://vlinderkind.nl/kindlersyndroom/" class="elementor-sub-item" tabindex="-1">Kindlersyndroom</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3966"><a href="https://vlinderkind.nl/wat-kun-je-eraan-doen/" class="elementor-sub-item" tabindex="-1">Wat kun je eraan doen?</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3967"><a class="elementor-item" tabindex="-1">Help mee</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3968"><a href="https://vlinderkind.nl/doneer/" class="elementor-sub-item" tabindex="-1">Doneer</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3969"><a href="https://vlinderkind.nl/kom-in-actie/" class="elementor-sub-item" tabindex="-1">Kom in actie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3970"><a href="https://vlinderkind.nl/belastingvrij-schenken/" class="elementor-sub-item" tabindex="-1">Belastingvrij schenken</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3971"><a href="https://vlinderkind.nl/online-collecte/" class="elementor-sub-item" tabindex="-1">Online collecte</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3972"><a href="https://vlinderkind.nl/bedrijven/" class="elementor-sub-item" tabindex="-1">Bedrijven</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3973"><a href="https://vlinderkind.nl/scholen/" class="elementor-sub-item" tabindex="-1">Scholen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3974"><a href="https://vlinderkind.nl/statiegeldactie/" class="elementor-sub-item" tabindex="-1">Statiegeldactie</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3975"><a href="https://vlinderkind.nl/vrijwillgerswerk/" class="elementor-sub-item" tabindex="-1">Vrijwillgerswerk</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3976"><a class="elementor-item" tabindex="-1">Vlinderkinderen</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3978"><a href="https://vlinderkind.nl/vlinderkind/" class="elementor-sub-item" tabindex="-1">Vlinderkind</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3977"><a href="https://vlinderkind.nl/lotgenotencontact/" class="elementor-sub-item" tabindex="-1">Lotgenotencontact</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3979"><a class="elementor-item" tabindex="-1">Over Ons</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3980"><a href="https://vlinderkind.nl/oorsprong-en-doelstelling/" class="elementor-sub-item" tabindex="-1">Oorsprong en doelstelling</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-has-children menu-item-3981"><a href="https://vlinderkind.nl/bestuur/" class="elementor-sub-item" tabindex="-1">Organisatie</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-3983"><a href="https://vlinderkind.nl/?jet_download=2368" class="elementor-sub-item" tabindex="-1">Bestuur</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3984"><a href="https://vlinderkind.nl/beleidsplannen/" class="elementor-sub-item" tabindex="-1">Beleidsplannen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3985"><a href="https://vlinderkind.nl/jaarverslagen-en-begrotingen/" class="elementor-sub-item" tabindex="-1">Jaarverslagen en begrotingen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3982"><a href="https://vlinderkind.nl/integriteitsbeleid/" class="elementor-sub-item" tabindex="-1">Integriteitsbeleid</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3986"><a href="https://vlinderkind.nl/onze-erkenningen/" class="elementor-sub-item" tabindex="-1">Onze erkenningen</a></li> </ul> </li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-ancestor current-menu-parent current_page_parent current_page_ancestor menu-item-has-children menu-item-3988"><a href="https://vlinderkind.nl/team/" class="elementor-item" tabindex="-1">Onderzoek</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3990"><a href="https://vlinderkind.nl/subsidie-aanvragen/" class="elementor-sub-item" tabindex="-1">Subsidie aanvragen</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3989"><a href="https://vlinderkind.nl/financiering-onderzoek/" class="elementor-sub-item" tabindex="-1">Gefinancierd onderzoek</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page current-menu-item page_item page-item-4374 current_page_item menu-item-4388"><a href="https://vlinderkind.nl/de-weg-naar-een-eb-diagnose/" aria-current="page" class="elementor-sub-item elementor-item-active" tabindex="-1">De weg naar een EB diagnose</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-4397"><a href="https://vlinderkind.nl/coseb/" class="elementor-sub-item" tabindex="-1">COSEB</a></li> </ul> </li> <li class="menu-item menu-item-type-custom menu-item-object-custom menu-item-has-children menu-item-3991"><a class="elementor-item" tabindex="-1">Media en informatie</a> <ul class="sub-menu elementor-nav-menu--dropdown"> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3995"><a href="https://vlinderkind.nl/actueel/" class="elementor-sub-item" tabindex="-1">Nieuws van Vlinderkind</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3994"><a href="https://vlinderkind.nl/folders-en-brochures/" class="elementor-sub-item" tabindex="-1">Folders en brochures</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3993"><a href="https://vlinderkind.nl/voor-de-pers/" class="elementor-sub-item" tabindex="-1">Voor de pers</a></li> <li class="menu-item menu-item-type-post_type menu-item-object-page menu-item-3992"><a href="https://vlinderkind.nl/materiaal/" class="elementor-sub-item" tabindex="-1">Materiaal</a></li> </ul> </li> </ul> </nav> </div> </div> </div> </div> <div class="elementor-column elementor-col-33 elementor-top-column 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class="elementor-element elementor-element-9c853be e-flex e-con-boxed e-con e-parent" data-id="9c853be" data-element_type="container" data-settings="{"jet_parallax_layout_list":[]}"> <div class="e-con-inner"> <div class="elementor-element elementor-element-702f532 elementor-widget elementor-widget-heading" data-id="702f532" data-element_type="widget" data-widget_type="heading.default"> <div class="elementor-widget-container"> <style>/*! elementor - v3.22.0 - 24-06-2024 */ .elementor-heading-title{padding:0;margin:0;line-height:1}.elementor-widget-heading .elementor-heading-title[class*=elementor-size-]>a{color:inherit;font-size:inherit;line-height:inherit}.elementor-widget-heading .elementor-heading-title.elementor-size-small{font-size:15px}.elementor-widget-heading .elementor-heading-title.elementor-size-medium{font-size:19px}.elementor-widget-heading .elementor-heading-title.elementor-size-large{font-size:29px}.elementor-widget-heading .elementor-heading-title.elementor-size-xl{font-size:39px}.elementor-widget-heading .elementor-heading-title.elementor-size-xxl{font-size:59px}</style><div class="elementor-heading-title elementor-size-default">Nieuws uit het UMCG</div> </div> </div> <div class="elementor-element elementor-element-635805a elementor-widget elementor-widget-heading" data-id="635805a" data-element_type="widget" data-widget_type="heading.default"> <div class="elementor-widget-container"> <h1 class="elementor-heading-title elementor-size-default"> De weg naar een EB diagnose</h1> </div> </div> <div class="elementor-element elementor-element-2598d6f elementor-widget elementor-widget-heading" data-id="2598d6f" data-element_type="widget" data-widget_type="heading.default"> <div class="elementor-widget-container"> <h2 class="elementor-heading-title elementor-size-default">Ervaringen en behoeften van ouders en patiënten</h2> </div> </div> <div class="elementor-element elementor-element-33fd334 elementor-widget elementor-widget-text-editor" data-id="33fd334" data-element_type="widget" data-widget_type="text-editor.default"> <div class="elementor-widget-container"> <style>/*! elementor - v3.22.0 - 24-06-2024 */ .elementor-widget-text-editor.elementor-drop-cap-view-stacked .elementor-drop-cap{background-color:#69727d;color:#fff}.elementor-widget-text-editor.elementor-drop-cap-view-framed .elementor-drop-cap{color:#69727d;border:3px solid;background-color:transparent}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap{margin-top:8px}.elementor-widget-text-editor:not(.elementor-drop-cap-view-default) .elementor-drop-cap-letter{width:1em;height:1em}.elementor-widget-text-editor .elementor-drop-cap{float:left;text-align:center;line-height:1;font-size:50px}.elementor-widget-text-editor .elementor-drop-cap-letter{display:inline-block}</style> <p>Nieuwe genetische technieken maken het mogelijk om sneller en nauwkeuriger een EB diagnosete stellen. Dit geeft patiënten, hun ouders en artsen snel duidelijkheid over de ziekte, prognose(toekomstverwachting van de ziekte) en behandeling. Om de zorg en het diagnostische traject te verbeteren, onderzochten experts van het EB Expertisecentrum in Groningen hoe patiënten en ouders dit diagnostisch proces ervaren. In 2022 interviewden zij 18 ouders van kinderen met EB en 8 volwassen patiënten met EB over hun ervaringen met het diagnostische proces en de impact over het krijgen van de diagnose EB. Uit de analyse kwamen tien hoofdthema’s naar voren, met overeenkomsten binnen drie groepen: ouders van kinderen met JEB en RDEB, ouders van kinderen met ‘gelokaliseerde’ EBS/DDEB, en volwassenen met ‘gelokaliseerde’ EB.</p><p>Er was grote behoefte aan een snelle diagnose en nauwkeurige prognose vanwege de grote onzekerheid over de toekomst bij de uiteenlopende vormen van EB en hun verschillend beloop. Het krijgen van de diagnose EB had verschillende emotionele gevolgen, variërend van wanhoop door onzekerheid tot opluchting door duidelijkheid. Het belang van meer bekendheid over EB werd benadrukt voor snellere herkenning en doorverwijzing. Deelnemers vertelden dat ze veel steun hadden aan ‘peer support’ via DEBRA en Vlinderkind; zowel het krijgen als het geven van steun aan lotgenoten hielp om met de ziekte om te gaan. Ze merkten ook tekortkomingen in de medische zorg op, vooral in de manier waarop artsen over de vorm en bijbehorende ernst van EB communiceren. Termen zoals ‘mild’ werden niet altijd als passend ervaren en wierpen drempels op voor het zoeken van zorg, deelname aan onderzoek en aansluiting bij de patiëntenvereniging. De onderzoekers vonden nog meer belangrijke inzichten over de ervaringen en behoeftes van patiënten en ouders die het diagnostische proces van EB hebben doorlopen. Deze informatie kan worden gevonden in het (Engelse) artikel dat onlangs is gepubliceerd in een toonaangevend, internationaal wetenschappelijk tijdschrift via deze link: <a href="http://10.1093/bjd/ljae242">10.1093/bjd/ljae242</a></p><p>Bij vragen: neem contact op via <a href="emailto:e.w.h.korte@umcg.nl">e.w.h.korte@umcg.nl</a> of <a href="emailto:r.baardman@umcg.nl">r.baardman@umcg.nl</a></p> </div> </div> <div class="elementor-element elementor-element-d33e61d elementor-widget elementor-widget-image" data-id="d33e61d" data-element_type="widget" data-widget_type="image.default"> <div class="elementor-widget-container"> <a href="https://vlinderkind.nl/wp-content/uploads/2024/11/de-weg-naar-een-eb-diagnose-afbeelding.jpg" data-elementor-open-lightbox="yes" data-elementor-lightbox-title="de weg naar een eb diagnose afbeelding" 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