{"id":222,"date":"2024-09-13T08:59:00","date_gmt":"2024-09-13T06:59:00","guid":{"rendered":"https:\/\/remeds.org\/?page_id=222"},"modified":"2025-07-02T15:06:51","modified_gmt":"2025-07-02T13:06:51","slug":"about-remeds","status":"publish","type":"page","link":"https:\/\/remeds.org\/nl\/about-remeds\/","title":{"rendered":"Over REMEDS"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"222\" class=\"elementor elementor-222\" data-elementor-post-type=\"page\">\n\t\t\t\t<div class=\"elementor-element elementor-element-49a3fe8 e-flex e-con-boxed e-con e-parent\" data-id=\"49a3fe8\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-cd5d78b e-con-full e-flex e-con e-child\" data-id=\"cd5d78b\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-6529737 elementor-widget elementor-widget-heading\" data-id=\"6529737\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h1 class=\"elementor-heading-title elementor-size-default\">Wie is REMEDS?<\/h1>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2517e79 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"2517e79\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-b1d8a1f e-con-full e-flex e-con e-child\" data-id=\"b1d8a1f\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-b40b553 elementor-widget__width-initial elementor-widget elementor-widget-text-editor\" data-id=\"b40b553\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>REMEDS is een initiatief van DupMECP2 - Lasst uns MDS heilen, een Europese non-profitorganisatie, toegewijd aan het ondersteunen van de wereldwijde MECP2 Duplicatie Syndroom (MDS) gemeenschap. Ons REMEDS-team bestaat uit een toegewijde arts, Dr. Gr\u00f6ppel, en andere MDS-experts die zich inzetten voor het bevorderen van onderzoek en pati\u00ebntenzorg voor het MECP2 duplicatie syndroom.<\/p><p>Met REMEDS willen we een uitgebreid, interactief en meertalig platform cre\u00ebren waar gegevens worden behandeld met de hoogste standaard voor de beveiliging en privacy van pati\u00ebntgegevens, met AVG-conforme opslag op een Europese server. \u00a0<\/p><p>Ons doel is om de communicatie en uitwisseling van informatie te optimaliseren om het begrip van de ziekte te vergroten, het onderzoek naar behandelingen te ondersteunen en cruciale steun te bieden aan families die getroffen zijn door MDS.  Door pati\u00ebnten, verzorgers, bedrijven in de gezondheidszorg en onderzoekers op \u00e9\u00e9n platform samen te brengen, stimuleren we een samenwerkingsomgeving die het begrip en beheer van MDS verbetert.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-64626b1 elementor-widget-tablet__width-initial elementor-widget elementor-widget-image\" data-id=\"64626b1\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t<figure class=\"wp-caption\">\n\t\t\t\t\t\t\t\t\t\t<img fetchpriority=\"high\" decoding=\"async\" width=\"800\" height=\"534\" src=\"https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-1024x683.jpg\" class=\"attachment-large size-large wp-image-1480\" alt=\"Caroline Covini David Covini en Dr. Gudrun Gr\u00f6ppel\" srcset=\"https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-1024x683.jpg 1024w, https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-300x200.jpg 300w, https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-768x512.jpg 768w, https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-1536x1024.jpg 1536w, https:\/\/remeds.org\/wp-content\/uploads\/2025\/02\/REMEDS_Who-we-are-2048x1365.jpg 2048w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/>\t\t\t\t\t\t\t\t\t\t\t<figcaption class=\"widget-image-caption wp-caption-text\">Caroline Covini, David Covini en Dr. Gudrun Gr\u00f6ppel<\/figcaption>\n\t\t\t\t\t\t\t\t\t\t<\/figure>\n\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9940913 elementor-fixed elementor-widget elementor-widget-image\" data-id=\"9940913\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;_position&quot;:&quot;fixed&quot;}\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"800\" height=\"919\" src=\"https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-891x1024.png\" class=\"attachment-large size-large wp-image-484\" alt=\"\" srcset=\"https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-891x1024.png 891w, https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-261x300.png 261w, https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-768x883.png 768w, https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-1336x1536.png 1336w, https:\/\/remeds.org\/wp-content\/uploads\/2024\/10\/Element-1@4x-1781x2048.png 1781w\" sizes=\"(max-width: 800px) 100vw, 800px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-9148461 e-con-full e-flex e-con e-child\" data-id=\"9148461\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-f1dc344 e-con-full e-flex e-con e-child\" data-id=\"f1dc344\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-b726836 e-con-full e-flex e-con e-child\" data-id=\"b726836\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-e8740cd elementor-widget elementor-widget-image\" data-id=\"e8740cd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img decoding=\"async\" width=\"500\" height=\"500\" src=\"https:\/\/remeds.org\/wp-content\/uploads\/2025\/05\/3_What_is_Remeds.svg\" class=\"attachment-full size-full wp-image-2881\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e87d59f elementor-widget elementor-widget-heading\" data-id=\"e87d59f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Wat is REMEDS?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-57a1b68 elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"57a1b68\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-f343b06 elementor-widget elementor-widget-text-editor\" data-id=\"f343b06\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>REMEDS staat voor REgister en Medische Enqu\u00eate voor MECP2 Duplicatie Syndroom. Het is een wereldwijd register dat is ontworpen om gegevens van de MDS-gemeenschap te verzamelen en te beheren. Dit innovatieve platform maakt het mogelijk om uitsluitend pati\u00ebnten met het MECP2 Duplicatie Syndroom te registreren en te enqu\u00eateren. Door het verzamelen van waardevolle informatie rechtstreeks van verzorgers door middel van enqu\u00eates, heeft REMEDS als doel om de ziekte, de werkelijke incidentie en progressie nauwkeuriger te begrijpen. Het maakt ook directe uitwisseling mogelijk tussen pati\u00ebnten, verzorgers en onderzoekers, waardoor een ondersteunende en goed ge\u00efnformeerde gemeenschap wordt bevorderd.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-0e75d6a e-con-full e-flex e-con e-child\" data-id=\"0e75d6a\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-0b19773 e-con-full e-flex e-con e-child\" data-id=\"0b19773\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-7fa74ef elementor-widget elementor-widget-image\" data-id=\"7fa74ef\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"500\" height=\"500\" src=\"https:\/\/remeds.org\/wp-content\/uploads\/2025\/05\/2_Surveys_Remeds.svg\" class=\"attachment-full size-full wp-image-2880\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9c8b9c3 elementor-widget__width-initial elementor-widget elementor-widget-heading\" data-id=\"9c8b9c3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default translation-block\">Wat zijn enqu\u00eates en het pati\u00ebntenregister?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7cecfdf elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"7cecfdf\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5e75f4f elementor-widget elementor-widget-text-editor\" data-id=\"5e75f4f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>De onderzoeken en het pati\u00ebntenregister zijn kernonderdelen van REMEDS.<\/p><p>Het pati\u00ebntenregister is een beveiligde database waarin pati\u00ebnten met een specifieke ziekte zich kunnen registreren en gedetailleerde informatie kunnen delen, zoals demografische gegevens, genetische informatie en medische voorgeschiedenis. Dit register helpt de incidentie en progressie van het MECP2 Duplicatie Syndroom wereldwijd te volgen en zorgt zo voor een beter begrip van de ziekte.<\/p><p>Enqu\u00eates zijn ontworpen om gedetailleerde informatie te verzamelen van pati\u00ebnten, verzorgers en zorgprofessionals over hun ervaringen met het MECP2 duplicatie syndroom. De enqu\u00eates helpen het register up-to-date te houden en geven onderzoekers en bedrijven in de gezondheidszorg een overzicht van de ziekte, wat uiteindelijk leidt tot betere behandelingen en zorgstrategie\u00ebn.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-17762e0 e-con-full e-flex e-con e-child\" data-id=\"17762e0\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t<div class=\"elementor-element elementor-element-542e4ba e-con-full e-flex e-con e-child\" data-id=\"542e4ba\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-22599ac elementor-widget elementor-widget-image\" data-id=\"22599ac\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"image.default\">\n\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<img loading=\"lazy\" decoding=\"async\" width=\"500\" height=\"500\" src=\"https:\/\/remeds.org\/wp-content\/uploads\/2025\/05\/1_Why-joining_Remeds.svg\" class=\"attachment-full size-full wp-image-2879\" alt=\"\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-a7e9899 elementor-widget__width-initial elementor-widget elementor-widget-heading\" data-id=\"a7e9899\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Waarom lid worden van REMEDS?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-07aedfe elementor-widget-divider--view-line elementor-widget elementor-widget-divider\" data-id=\"07aedfe\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"divider.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-divider\">\n\t\t\t<span class=\"elementor-divider-separator\">\n\t\t\t\t\t\t<\/span>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5b044a2 elementor-widget elementor-widget-text-editor\" data-id=\"5b044a2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p class=\"translation-block\">Door deel te nemen, draagt u bij aan het verbeteren van het begrip en de behandeling van het <strong>MECP2 duplicatie syndroom<\/strong>. Uw betrokkenheid helpt de ontwikkeling van nieuwe therapie\u00ebn te versnellen en verbetert de kwaliteit van de zorg voor alle getroffen kinderen. Daarnaast krijgt u toegang tot een ondersteunende gemeenschap en blijft u op de hoogte van de nieuwste wetenschappelijke ontwikkelingen en onderzoeksresultaten. Door uw ervaringen en gegevens te delen, speelt u een cruciale rol in het vormgeven van de toekomst van medisch onderzoek en pati\u00ebntenzorg voor het <strong>MECP2 duplicatie syndroom<\/strong>.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-e1eae78 e-flex e-con-boxed e-con e-parent\" data-id=\"e1eae78\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t<div class=\"elementor-element elementor-element-ad48623 e-flex e-con-boxed e-con e-child\" data-id=\"ad48623\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t\t<div class=\"e-con-inner\">\n\t\t\t\t<div class=\"elementor-element elementor-element-ec56c6e elementor-widget elementor-widget-heading\" data-id=\"ec56c6e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Hoe werkt REMEDS?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-40191e4 elementor-widget elementor-widget-text-editor\" data-id=\"40191e4\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Elke registratie wordt beoordeeld en gevalideerd door een toegewijde REMEDS arts om er zeker van te zijn dat alle pati\u00ebnten het MECP2 Duplicatie Syndroom hebben. Zodra de diagnose is bevestigd door onze arts, ontvangen zorgverleners meldingen over wetenschappelijk nieuws en worden ze uitgenodigd om deel te nemen aan onderzoeken die zijn ontworpen door farmaceutische bedrijven, wetenschappers en professionals in de gezondheidszorg.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-b45c0f4 e-con-full e-flex e-con e-child\" data-id=\"b45c0f4\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-4f3bffa e-con-full e-grid e-con e-child\" data-id=\"4f3bffa\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-dff8bb7 e-con-full e-flex e-con e-child\" data-id=\"dff8bb7\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-8d6e723 elementor-widget elementor-widget-heading\" data-id=\"8d6e723\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">01<\/p>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-4e0b603 elementor-widget elementor-widget-heading\" data-id=\"4e0b603\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Een account aanmaken<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2aed89d elementor-widget elementor-widget-text-editor\" data-id=\"2aed89d\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<p>Meld u aan bij een priv\u00e9ruimte met multifactorauthenticatietools.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-7a5ab43 e-con-full e-flex e-con e-child\" data-id=\"7a5ab43\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-4717bc2 elementor-widget elementor-widget-heading\" data-id=\"4717bc2\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">02<\/p>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-16bcce5 elementor-widget elementor-widget-heading\" data-id=\"16bcce5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Een pati\u00ebnt registreren\n<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-4fc5d83 elementor-widget elementor-widget-text-editor\" data-id=\"4fc5d83\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<div id=\"brxe-uymlbq\" class=\"brxe-block\">\n<p>Geef gedetailleerde pati\u00ebntinformatie en voeg een bewijs van diagnose bij ter validatie door de REMEDS-arts.<\/p>\n<\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-01bd2ab e-con-full e-flex e-con e-child\" data-id=\"01bd2ab\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-670d4e5 elementor-widget elementor-widget-heading\" data-id=\"670d4e5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">03<\/p>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-c8991d5 elementor-widget elementor-widget-heading\" data-id=\"c8991d5\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Succesvolle registratie \u00a0<\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5c1d4be elementor-widget elementor-widget-text-editor\" data-id=\"5c1d4be\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<div id=\"brxe-pumhlk\" class=\"brxe-block\"><p>Eenmaal gevalideerd, krijgt u toegang tot het platform en kunt u uw pati\u00ebntgegevens beheren.<\/p><\/div>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-635f4be e-con-full e-flex e-con e-child\" data-id=\"635f4be\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-7eb8428 elementor-widget elementor-widget-heading\" data-id=\"7eb8428\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<p class=\"elementor-heading-title elementor-size-default\">04<\/p>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-e1aca5f elementor-widget elementor-widget-heading\" data-id=\"e1aca5f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h3 class=\"elementor-heading-title elementor-size-default\">Aan de slag <\/h3>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-2a9df16 elementor-widget elementor-widget-text-editor\" data-id=\"2a9df16\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"text-editor.default\">\n\t\t\t\t\t\t\t\t\t<section id=\"brxe-ixcyed\" class=\"brxe-section\"><div id=\"brxe-tcderi\" class=\"brxe-container brx-grid\"><div id=\"brxe-sypfqn\" class=\"brxe-block\"><p>Krijg toegang tot en neem deel aan open enqu\u00eates, bekijk de geschiedenis van acties en draag bij aan lopend onderzoek.<\/p><\/div><\/div><\/section>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-212fa9e e-con-full e-flex e-con e-parent\" data-id=\"212fa9e\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t<div class=\"elementor-element elementor-element-1400ab0 e-con-full e-flex e-con e-child\" data-id=\"1400ab0\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t<div class=\"elementor-element elementor-element-2fffc6a elementor-widget elementor-widget-heading\" data-id=\"2fffc6a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Heeft u de diagnose MECP2 duplicatie syndroom?<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-6b0412a elementor-widget elementor-widget-jet-engine-component-400\" data-id=\"6b0412a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"jet-engine-component-400.default\">\n\t\t\t\t<div class=\"elementor-widget-container\">\n\t\t\t\t\t<style>.elementor-400 .elementor-element.elementor-element-6b9166f{--display:flex;--flex-direction:row;--container-widget-width:calc( ( 1 - var( --container-widget-flex-grow ) ) * 100% );--container-widget-height:100%;--container-widget-flex-grow:1;--container-widget-align-self:stretch;--flex-wrap-mobile:wrap;--justify-content:flex-start;--align-items:center;--border-radius:36px 36px 36px 36px;--margin-top:0px;--margin-bottom:0px;--margin-left:0px;--margin-right:0px;--padding-top:10px;--padding-bottom:12px;--padding-left:13px;--padding-right:13px;}.elementor-400 .elementor-element.elementor-element-6b9166f:not(.elementor-motion-effects-element-type-background), .elementor-400 .elementor-element.elementor-element-6b9166f > .elementor-motion-effects-container > .elementor-motion-effects-layer{background-color:var( --e-global-color-9b83194 );}.elementor-400 .elementor-element.elementor-element-6b9166f.e-con{--align-self:flex-start;--order:-99999 \/* order start hack *\/;}.elementor-widget-heading .elementor-heading-title{font-family:var( --e-global-typography-primary-font-family ), Sans-serif;font-weight:var( --e-global-typography-primary-font-weight );color:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-c258b9a .elementor-heading-title{font-family:\"Mulish\", Sans-serif;font-size:1.2rem;font-weight:600;color:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-c0331a6{--display:flex;--flex-direction:row;--container-widget-width:initial;--container-widget-height:100%;--container-widget-flex-grow:1;--container-widget-align-self:stretch;--flex-wrap-mobile:wrap;--margin-top:-4px;--margin-bottom:0px;--margin-left:0px;--margin-right:0px;}.elementor-widget-icon.elementor-view-stacked .elementor-icon{background-color:var( --e-global-color-primary );}.elementor-widget-icon.elementor-view-framed .elementor-icon, .elementor-widget-icon.elementor-view-default .elementor-icon{color:var( --e-global-color-primary );border-color:var( --e-global-color-primary );}.elementor-widget-icon.elementor-view-framed .elementor-icon, .elementor-widget-icon.elementor-view-default .elementor-icon svg{fill:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-150af24 .elementor-icon-wrapper{text-align:center;}.elementor-400 .elementor-element.elementor-element-150af24.elementor-view-stacked .elementor-icon{background-color:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-150af24.elementor-view-framed .elementor-icon, .elementor-400 .elementor-element.elementor-element-150af24.elementor-view-default .elementor-icon{color:var( --e-global-color-primary );border-color:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-150af24.elementor-view-framed .elementor-icon, .elementor-400 .elementor-element.elementor-element-150af24.elementor-view-default .elementor-icon svg{fill:var( --e-global-color-primary );}.elementor-400 .elementor-element.elementor-element-150af24 .elementor-icon{font-size:30px;}.elementor-400 .elementor-element.elementor-element-150af24 .elementor-icon svg{height:30px;}.elementor-400 .elementor-element.elementor-element-150af24{margin:0px 0px calc(var(--kit-widget-spacing, 0px) + -5px) -5px;top:-1px;}body:not(.rtl) .elementor-400 .elementor-element.elementor-element-150af24{left:0px;}body.rtl .elementor-400 .elementor-element.elementor-element-150af24{right:0px;}.elementor-400 .elementor-element.elementor-element-fd98fa4 .elementor-icon-wrapper{text-align:center;}.elementor-400 .elementor-element.elementor-element-fd98fa4 .elementor-icon{font-size:14px;}.elementor-400 .elementor-element.elementor-element-fd98fa4 .elementor-icon svg{height:14px;}.elementor-400 .elementor-element.elementor-element-fd98fa4{margin:0px 0px calc(var(--kit-widget-spacing, 0px) + 0px) -4px;top:4px;}body:not(.rtl) .elementor-400 .elementor-element.elementor-element-fd98fa4{left:8px;}body.rtl .elementor-400 .elementor-element.elementor-element-fd98fa4{right:8px;}@media(min-width:768px){.elementor-400 .elementor-element.elementor-element-c0331a6{--width:auto;}}@media(max-width:767px){.elementor-400 .elementor-element.elementor-element-6b9166f{--width:auto;--align-items:flex-start;--container-widget-width:calc( ( 1 - var( --container-widget-flex-grow ) ) * 100% );--flex-wrap:nowrap;}.elementor-400 .elementor-element.elementor-element-c258b9a{width:var( --container-widget-width, 439px );max-width:439px;--container-widget-width:439px;--container-widget-flex-grow:0;}.elementor-400 .elementor-element.elementor-element-c0331a6{--width:20px;}}\/* Start custom CSS for container, class: .elementor-element-6b9166f *\/.button-main{rn  rn  transition: transform 0.3s ease;rn  rn}rnrn.button-main:hover .icon-btn-bg {rn        transform: translate( -1px , 0 ) rotate(180deg);rn        transform-origin: center;rn   ttttransition: transform 0.4s ease;rn    }rnrn.button-main:hover .button-main-text{rn  text-decoration: underline #ffffff65;rn  rn}rn.icon-btn-bg {rn  rn  transition: transform 0.6s ease;rn  rn}\/* End custom CSS *\/\n\/* Start Custom Fonts CSS *\/@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: normal;\n\tfont-weight: normal;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-regular.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: italic;\n\tfont-weight: normal;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-italic.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: normal;\n\tfont-weight: 600;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-600.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: italic;\n\tfont-weight: 600;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-600italic.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: normal;\n\tfont-weight: 700;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-700.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: normal;\n\tfont-weight: 500;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-500.woff2') format('woff2');\n}\n@font-face {\n\tfont-family: 'Mulish';\n\tfont-style: italic;\n\tfont-weight: 700;\n\tfont-display: auto;\n\tsrc: url('https:\/\/remeds.org\/wp-content\/uploads\/2024\/08\/mulish-v13-latin-700italic.woff2') format('woff2');\n}\n\/* End Custom Fonts CSS *\/<\/style>\t\t<div data-elementor-type=\"jet-engine-component\" data-elementor-id=\"400\" class=\"elementor elementor-400 jet-listing-grid--400 jet-component-instance-5304\" data-elementor-post-type=\"jet-engine\" style=\"\">\n\t\t\t\t<a class=\"elementor-element elementor-element-6b9166f e-con-full button-main e-flex e-con e-child\" data-id=\"6b9166f\" data-element_type=\"container\" data-e-type=\"container\" data-settings=\"{&quot;background_background&quot;:&quot;classic&quot;}\" href=\"https:\/\/remeds.org\/nl\/account\/patients\/\">\n\t\t\t\t<div class=\"elementor-element elementor-element-c258b9a elementor-widget-mobile__width-initial elementor-widget elementor-widget-heading\" data-id=\"c258b9a\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"heading.default\">\n\t\t\t\t\t<h2 class=\"elementor-heading-title elementor-size-default\">Een pati\u00ebnt registreren<\/h2>\t\t\t\t<\/div>\n\t\t<div class=\"elementor-element elementor-element-c0331a6 e-con-full e-flex e-con e-child\" data-id=\"c0331a6\" data-element_type=\"container\" data-e-type=\"container\">\n\t\t\t\t<div class=\"elementor-element elementor-element-150af24 elementor-absolute icon-btn-bg elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"150af24\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;_position&quot;:&quot;absolute&quot;}\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" xmlns:serif=\"http:\/\/www.serif.com\/\" width=\"100%\" height=\"100%\" viewbox=\"0 0 29 28\" xml:space=\"preserve\" style=\"fill-rule:evenodd;clip-rule:evenodd;stroke-linejoin:round;stroke-miterlimit:2;\"> <g transform=\"matrix(1,0,0,1,-946,-526.35)\"> <g transform=\"matrix(1,0,0,1,946,526)\"> <path d=\"M27.756,12.484C28.491,15.695 27.556,19.032 25.053,21.876C22.588,24.691 18.556,27.014 14,27.534C9.444,28.085 5.412,26.631 2.947,23.902C0.444,21.191 -0.491,17.205 0.244,13.092C0.981,8.957 3.094,5.509 5.562,3.293C8.067,1.061 10.926,0.059 14,0.423C17.074,0.793 19.933,2.361 22.438,4.461C24.906,6.59 27.018,9.252 27.756,12.484L27.756,12.484Z\" style=\"fill:white;fill-rule:nonzero;\"><\/path> <\/g> <\/g> <\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-fd98fa4 elementor-absolute elementor-view-default elementor-widget elementor-widget-icon\" data-id=\"fd98fa4\" data-element_type=\"widget\" data-e-type=\"widget\" data-settings=\"{&quot;_position&quot;:&quot;absolute&quot;}\" data-widget_type=\"icon.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-wrapper\">\n\t\t\t<div class=\"elementor-icon\">\n\t\t\t<svg xmlns=\"http:\/\/www.w3.org\/2000\/svg\" xmlns:xlink=\"http:\/\/www.w3.org\/1999\/xlink\" xmlns:serif=\"http:\/\/www.serif.com\/\" width=\"100%\" height=\"100%\" viewbox=\"0 0 5 8\" xml:space=\"preserve\" style=\"fill-rule:evenodd;clip-rule:evenodd;stroke-linecap:round;stroke-linejoin:round;\"> <g transform=\"matrix(1,0,0,1,-958.3,-535.85)\"> <g transform=\"matrix(1,0,0,1,946,526)\"> <path d=\"M13.3,10.85L16.1,13.65L13.3,16.45\" style=\"fill:none;fill-rule:nonzero;stroke:rgb(24,37,52);stroke-width:2px;\"><\/path> <\/g> <\/g> <\/svg>\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/a>\n\t\t\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>Who is REMEDS? REMEDS is an initiative by DupMECP2 \u2013 Lasst uns MDS heilen, a European based non-profit organization, dedicated to supporting the global MECP2 Duplication Syndrome (MDS) community. Our REMEDS team includes a dedicated medical doctor, Dr. Gr\u00f6ppel, and other MDS experts committed to advancing research and patient care for MECP2 duplication syndrome. With [&hellip;]<\/p>\n","protected":false},"author":73,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"_jf_save_progress":"","footnotes":""},"class_list":["post-222","page","type-page","status-publish","hentry"],"_links":{"self":[{"href":"https:\/\/remeds.org\/nl\/wp-json\/wp\/v2\/pages\/222","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/remeds.org\/nl\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/remeds.org\/nl\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/remeds.org\/nl\/wp-json\/wp\/v2\/users\/73"}],"replies":[{"embeddable":true,"href":"https:\/\/remeds.org\/nl\/wp-json\/wp\/v2\/comments?post=222"}],"version-history":[{"count":10,"href":"https:\/\/remeds.org\/nl\/wp-json\/wp\/v2\/pages\/222\/revisions"}],"predecessor-version":[{"id":3364,"href":"https:\/\/remeds.org\/nl\/wp-json\/wp\/v2\/pages\/222\/revisions\/3364"}],"wp:attachment":[{"href":"https:\/\/remeds.org\/nl\/wp-json\/wp\/v2\/media?parent=222"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}