{"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\/hu\/about-remeds\/","title":{"rendered":"Az REMEDS-r\u0151l"},"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\">Ki az 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>Az REMEDS a DupMECP2 - Lasst uns MDS heilen, egy eur\u00f3pai sz\u00e9khely\u0171 nonprofit szervezet kezdem\u00e9nyez\u00e9se, amely a MECP2 duplik\u00e1ci\u00f3s szindr\u00f3ma (MDS) glob\u00e1lis k\u00f6z\u00f6ss\u00e9g\u00e9nek t\u00e1mogat\u00e1s\u00e1t t\u0171zte ki c\u00e9lul. Az REMEDS csapatunkban egy elk\u00f6telezett orvos, Dr. Gr\u00f6ppel \u00e9s m\u00e1s MDS-szak\u00e9rt\u0151k is r\u00e9szt vesznek, akik elk\u00f6telezettek a MECP2 duplik\u00e1ci\u00f3s szindr\u00f3ma kutat\u00e1s\u00e1nak \u00e9s betegell\u00e1t\u00e1s\u00e1nak el\u0151mozd\u00edt\u00e1sa ir\u00e1nt.<\/p><p>Az REMEDS-vel egy \u00e1tfog\u00f3, interakt\u00edv \u00e9s t\u00f6bbnyelv\u0171 platformot k\u00edv\u00e1nunk l\u00e9trehozni, ahol az adatokat a legmagasabb szint\u0171 biztons\u00e1ggal \u00e9s a betegek adatainak v\u00e9delm\u00e9vel kezelj\u00fck, a GDPR-nek megfelel\u0151 t\u00e1rol\u00e1ssal egy eur\u00f3pai szerveren. \u00a0<\/p><p>C\u00e9lunk a kommunik\u00e1ci\u00f3 \u00e9s az inform\u00e1ci\u00f3csere optimaliz\u00e1l\u00e1sa a betegs\u00e9g jobb meg\u00e9rt\u00e9se, a kezel\u00e9si kutat\u00e1sok t\u00e1mogat\u00e1sa \u00e9s az MDS-ben \u00e9rintett csal\u00e1dok sz\u00e1m\u00e1ra ny\u00fajtott alapvet\u0151 t\u00e1mogat\u00e1s \u00e9rdek\u00e9ben. Azzal, hogy egyetlen platformon egyes\u00edtj\u00fck a betegeket, az \u00e1pol\u00f3kat, az eg\u00e9szs\u00e9g\u00fcgyi v\u00e1llalatokat \u00e9s a kutat\u00f3kat, olyan egy\u00fcttm\u0171k\u00f6d\u00e9si k\u00f6rnyezetet \u00f6szt\u00f6nz\u00fcnk, amely jav\u00edtja az MDS meg\u00e9rt\u00e9s\u00e9t \u00e9s kezel\u00e9s\u00e9t.<\/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 \u00e9s 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 \u00e9s 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\">Mi az az 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>Az REMEDS a REgister and Medical Survey for MECP2 Duplication Syndrome r\u00f6vid\u00edt\u00e9se. Ez egy glob\u00e1lis regiszter, amelyet az MDS k\u00f6z\u00f6ss\u00e9g adatainak gy\u0171jt\u00e9s\u00e9re \u00e9s kezel\u00e9s\u00e9re terveztek. Ez az innovat\u00edv platform kiz\u00e1r\u00f3lag a MECP2 duplik\u00e1ci\u00f3s szindr\u00f3m\u00e1ban \u00e9rintett betegek regisztr\u00e1ci\u00f3j\u00e1t \u00e9s felm\u00e9r\u00e9s\u00e9t teszi lehet\u0151v\u00e9. Az REMEDS c\u00e9lja, hogy az \u00e1pol\u00f3kt\u00f3l k\u00f6zvetlen\u00fcl a felm\u00e9r\u00e9sek r\u00e9v\u00e9n \u00e9rt\u00e9kes inform\u00e1ci\u00f3kat gy\u0171jts\u00f6n, \u00e9s ez\u00e1ltal pontosabban meg\u00e9rtse a betegs\u00e9get, annak val\u00f3di el\u0151fordul\u00e1s\u00e1t \u00e9s lefoly\u00e1s\u00e1t. Lehet\u0151v\u00e9 teszi tov\u00e1bb\u00e1 a betegek, az \u00e1pol\u00f3k \u00e9s a kutat\u00f3k k\u00f6z\u00f6tti k\u00f6zvetlen eszmecser\u00e9t, el\u0151seg\u00edtve egy t\u00e1mogat\u00f3 \u00e9s t\u00e1j\u00e9kozott k\u00f6z\u00f6ss\u00e9g kialakul\u00e1s\u00e1t.<\/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\">Mik azok a felm\u00e9r\u00e9sek \u00e9s a <br>Betegnyilv\u00e1ntart\u00e1s?<\/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>A felm\u00e9r\u00e9sek \u00e9s a betegnyilv\u00e1ntart\u00e1s az REMEDS k\u00f6zponti elemei.<\/p><p>A betegnyilv\u00e1ntart\u00e1s egy biztons\u00e1gos adatb\u00e1zis, ahol az adott betegs\u00e9gben szenved\u0151 betegek regisztr\u00e1lhatnak \u00e9s megoszthatj\u00e1k egym\u00e1ssal a r\u00e9szletes inform\u00e1ci\u00f3kat, p\u00e9ld\u00e1ul a beteg demogr\u00e1fiai adatait, genetikai inform\u00e1ci\u00f3kat \u00e9s k\u00f3rt\u00f6rt\u00e9netet. Ez a nyilv\u00e1ntart\u00e1s seg\u00edt nyomon k\u00f6vetni a MECP2-duplik\u00e1ci\u00f3s szindr\u00f3ma el\u0151fordul\u00e1s\u00e1t \u00e9s progresszi\u00f3j\u00e1t vil\u00e1gszerte, ez\u00e1ltal jobban megismerhet\u0151v\u00e9 t\u00e9ve a betegs\u00e9get.<\/p><p>A felm\u00e9r\u00e9seket \u00fagy tervezt\u00e9k, hogy r\u00e9szletes inform\u00e1ci\u00f3kat gy\u0171jtsenek a betegekt\u0151l, az \u00e1pol\u00f3kt\u00f3l \u00e9s az eg\u00e9szs\u00e9g\u00fcgyi szakemberekt\u0151l a MECP2 duplik\u00e1ci\u00f3s szindr\u00f3m\u00e1val kapcsolatos tapasztalataikr\u00f3l. A felm\u00e9r\u00e9sek seg\u00edtenek naprak\u00e9szen tartani a nyilv\u00e1ntart\u00e1st, mik\u00f6zben a kutat\u00f3k \u00e9s az eg\u00e9szs\u00e9g\u00fcgyi v\u00e1llalatok sz\u00e1m\u00e1ra \u00e1ttekint\u00e9st ny\u00fajtanak a betegs\u00e9gr\u0151l, ami v\u00e9gs\u0151 soron a jobb kezel\u00e9si \u00e9s gondoz\u00e1si strat\u00e9gi\u00e1khoz vezet.<\/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\">Mi\u00e9rt \u00e9rdemes csatlakozni az REMEDS-hez?<\/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\">A r\u00e9szv\u00e9tellel \u00d6n hozz\u00e1j\u00e1rul a MECP2 duplik\u00e1ci\u00f3s szindr\u00f3ma jobb meg\u00e9rt\u00e9s\u00e9hez \u00e9s kezel\u00e9s\u00e9hez. Az \u00d6n r\u00e9szv\u00e9tele seg\u00edt felgyors\u00edtani az \u00faj ter\u00e1pi\u00e1k kifejleszt\u00e9s\u00e9t, \u00e9s jav\u00edtja az \u00f6sszes \u00e9rintett gyermek ell\u00e1t\u00e1s\u00e1nak min\u0151s\u00e9g\u00e9t. Ezen t\u00falmen\u0151en hozz\u00e1f\u00e9r\u00e9st nyer egy t\u00e1mogat\u00f3 k\u00f6z\u00f6ss\u00e9ghez, \u00e9s t\u00e1j\u00e9koz\u00f3dhat a leg\u00fajabb tudom\u00e1nyos eredm\u00e9nyekr\u0151l \u00e9s kutat\u00e1si eredm\u00e9nyekr\u0151l. Tapasztalataid \u00e9s adataid megoszt\u00e1s\u00e1val d\u00f6nt\u0151 szerepet j\u00e1tszol a MECP2-duplik\u00e1ci\u00f3s szindr\u00f3ma orvosi kutat\u00e1s\u00e1nak \u00e9s betegell\u00e1t\u00e1s\u00e1nak j\u00f6v\u0151j\u00e9nek alak\u00edt\u00e1s\u00e1ban.<\/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\">Hogyan m\u0171k\u00f6dik az 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>Minden egyes regisztr\u00e1ci\u00f3t egy REMEDS orvos fel\u00fclvizsg\u00e1l \u00e9s valid\u00e1l, biztos\u00edtva, hogy minden betegn\u00e9l fenn\u00e1lljon a MECP2 duplik\u00e1ci\u00f3s szindr\u00f3ma. Amint orvosunk meger\u0151s\u00edti a diagn\u00f3zist, az \u00e1pol\u00f3k \u00e9rtes\u00edt\u00e9st kapnak a tudom\u00e1nyos h\u00edrekr\u0151l, \u00e9s megh\u00edv\u00e1st kapnak a gy\u00f3gyszergy\u00e1rt\u00f3 c\u00e9gek, tud\u00f3sok \u00e9s eg\u00e9szs\u00e9g\u00fcgyi szakemberek \u00e1ltal tervezett felm\u00e9r\u00e9sekben val\u00f3 r\u00e9szv\u00e9telre.<\/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\">Fi\u00f3k l\u00e9trehoz\u00e1sa<\/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>Jelentkezzen be egy priv\u00e1t t\u00e1rhelyre t\u00f6bbfaktoros hiteles\u00edt\u00e9si eszk\u00f6z\u00f6kkel.<\/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\">P\u00e1ciens regisztr\u00e1l\u00e1sa\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>Adja meg a beteg r\u00e9szletes adatait, \u00e9s csatolja a diagn\u00f3zis igazol\u00e1s\u00e1t, az REMEDS orvos \u00e1ltali hiteles\u00edt\u00e9shez.<\/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\">Regisztr\u00e1ci\u00f3 sikeres \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>A hiteles\u00edt\u00e9st k\u00f6vet\u0151en l\u00e9pjen be a platformra, \u00e9s kezelje a beteginform\u00e1ci\u00f3kat.<\/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\">Kezdje el <\/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>Hozz\u00e1f\u00e9r\u00e9s \u00e9s r\u00e9szv\u00e9tel ny\u00edlt felm\u00e9r\u00e9sekben, az int\u00e9zked\u00e9sek el\u0151zm\u00e9nyeinek megtekint\u00e9se, valamint hozz\u00e1j\u00e1rul\u00e1s a folyamatban l\u00e9v\u0151 kutat\u00e1si er\u0151fesz\u00edt\u00e9sekhez.<\/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\">MECP2 duplik\u00e1ci\u00f3 szindr\u00f3ma diagn\u00f3zisa van?<\/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-6877\" 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\/hu\/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\">P\u00e1ciens regisztr\u00e1l\u00e1sa<\/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\" 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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\/hu\/wp-json\/wp\/v2\/pages\/222","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/remeds.org\/hu\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/remeds.org\/hu\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/remeds.org\/hu\/wp-json\/wp\/v2\/users\/73"}],"replies":[{"embeddable":true,"href":"https:\/\/remeds.org\/hu\/wp-json\/wp\/v2\/comments?post=222"}],"version-history":[{"count":10,"href":"https:\/\/remeds.org\/hu\/wp-json\/wp\/v2\/pages\/222\/revisions"}],"predecessor-version":[{"id":3364,"href":"https:\/\/remeds.org\/hu\/wp-json\/wp\/v2\/pages\/222\/revisions\/3364"}],"wp:attachment":[{"href":"https:\/\/remeds.org\/hu\/wp-json\/wp\/v2\/media?parent=222"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}