{"id":33479,"date":"2025-09-04T10:45:04","date_gmt":"2025-09-04T08:45:04","guid":{"rendered":"https:\/\/dupmecp2.eu\/?p=33479"},"modified":"2025-09-10T12:55:39","modified_gmt":"2025-09-10T10:55:39","slug":"remeds-miedzynarodowy-rejestr-zespol-duplikacji-mecp2","status":"publish","type":"post","link":"https:\/\/dupmecp2.eu\/pl\/remeds-miedzynarodowy-rejestr-zespol-duplikacji-mecp2\/","title":{"rendered":"REMEDS: Mi\u0119dzynarodowy rejestr pacjent\u00f3w REMEDS"},"content":{"rendered":"<p>Nadszed\u0142 czas! Zapraszamy wszystkie rodziny MDS do zaanga\u017cowania si\u0119 w&nbsp;<strong>REMEDS, MEDYCZNA PLATFORMA REJESTRACYJNA I BADAWCZA DLA OS\u00d3B DOTKNI\u0118TYCH SYNDROMEM DUPLIKACJI GENU MECP2<\/strong>&nbsp;(MDS) z siedzib\u0105 w Europie.<\/p>\n\n\n\n<p><strong>REMEDS to bezpieczna, wieloj\u0119zyczna platforma, na kt\u00f3rej mo\u017cna :<\/strong><\/p>\n\n\n\n<ul class=\"wp-block-list\">\n<li><strong>Rejestr&nbsp;<\/strong>dziecko lub krewny z MDS<\/li>\n\n\n\n<li><strong>Udost\u0119pnianie informacji&nbsp;<\/strong>cenne informacje na temat zespo\u0142u, kt\u00f3re przyczyniaj\u0105 si\u0119 do bada\u0144 oraz poprawy opieki i leczenia<\/li>\n\n\n\n<li><strong>Bycie na bie\u017c\u0105co<\/strong>&nbsp;o nowych badaniach i ankietach, w kt\u00f3rych mo\u017cna wzi\u0105\u0107 udzia\u0142<\/li>\n<\/ul>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-white-color has-text-color has-background has-link-color wp-element-button\" href=\"https:\/\/remeds.org\/\" style=\"border-radius:11px;background-color:#f7a13f\"><strong>Gotowy do rozpocz\u0119cia?<\/strong><\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p>Wszystkie dane s\u0105 w ca\u0142o\u015bci&nbsp;<strong>chronione i anonimowe<\/strong>&nbsp;- a u\u017cytkownik zachowuje kontrol\u0119 nad tym, co udost\u0119pnia przez ca\u0142y czas. REMEDS spe\u0142nia najwy\u017csze standardy&nbsp;<strong>RGPD&nbsp;<\/strong>i bezpiecze\u0144stwo danych medycznych.<br><br>Zosta\u0142a stworzona z pomoc\u0105 lekarzy ze Szpitala Uniwersyteckiego Johannesa Keplera w Austrii, porad specjalist\u00f3w takich jak dr Davut Pehlivan i prof. Hilde Van Esch oraz w odpowiedzi na potrzeby wyra\u017cane przez rodziny. Platforma powsta\u0142a dzi\u0119ki wsparciu firmy Ionis i zosta\u0142a zatwierdzona przez prawnika z do\u015bwiadczeniem w zakresie ochrony danych.<br><br><strong>Dlaczego warto do\u0142\u0105czy\u0107 do REMEDS?<\/strong><br><strong>Poniewa\u017c twoja historia ma znaczenie.&nbsp;<\/strong>Ka\u017cdy wk\u0142ad pomaga w badaniach nad lepszym zrozumieniem zespo\u0142u, ocenie \u015bcie\u017cek opieki, pracy nad lepszymi metodami leczenia i us\u0142ugami wsparcia oraz zrozumieniu geograficznego rozmieszczenia rodzin na ca\u0142ym \u015bwiecie.<\/p>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<figure class=\"wp-block-embed is-type-video is-provider-youtube wp-block-embed-youtube wp-embed-aspect-16-9 wp-has-aspect-ratio\"><div class=\"wp-block-embed__wrapper\">\n<iframe title=\"REMEDS REgister i platforma bada\u0144 medycznych dla zespo\u0142u duplikacji MECP2\" width=\"800\" height=\"450\" data-src=\"https:\/\/www.youtube.com\/embed\/8Q4Yizjlm6w?feature=oembed\" frameborder=\"0\" allow=\"accelerometer; autoplay; clipboard-write; encrypted-media; gyroscope; picture-in-picture; web-share\" referrerpolicy=\"strict-origin-when-cross-origin\" allowfullscreen src=\"data:image\/svg+xml;base64,PHN2ZyB3aWR0aD0iMSIgaGVpZ2h0PSIxIiB4bWxucz0iaHR0cDovL3d3dy53My5vcmcvMjAwMC9zdmciPjwvc3ZnPg==\" class=\"lazyload\" data-load-mode=\"1\"><\/iframe>\n<\/div><\/figure>\n\n\n\n<p><strong>Rejestracja - jak to dzia\u0142a<\/strong><br>Aby do\u0142\u0105czy\u0107 do REMEDS, wykonaj poni\u017csze kroki:<br>1) Utw\u00f3rz konto u\u017cytkownika na REMEDS.org - rejestracja jest bezpieczna za po\u015brednictwem adresu e-mail.<br>2) Zarejestruj swoje dziecko, dostarczaj\u0105c informacje medyczne i dow\u00f3d diagnozy (na przyk\u0142ad raport z testu genetycznego lub za\u015bwiadczenie lekarskie).<br>3) Po sprawdzeniu i zatwierdzeniu przez zesp\u00f3\u0142 medyczny REMEDS b\u0119dziesz m\u00f3g\u0142 zarz\u0105dza\u0107 danymi swojego dziecka i bra\u0107 udzia\u0142 w trwaj\u0105cych ankietach.<\/p>\n\n\n\n<p><strong>Je\u015bli masz jakie\u015b pytania lub potrzebujesz pomocy, nie wahaj si\u0119 skontaktowa\u0107 z nami pod adresem office@remeds.org - z przyjemno\u015bci\u0105 pomo\u017cemy Ci na ka\u017cdym kroku.<\/strong><\/p>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<div class=\"wp-block-buttons is-layout-flex wp-block-buttons-is-layout-flex\">\n<div class=\"wp-block-button\"><a class=\"wp-block-button__link has-white-color has-text-color has-background has-link-color wp-element-button\" href=\"https:\/\/remeds.org\/\" style=\"border-radius:11px;background-color:#f7a13f\">Zarejestruj si\u0119 tutaj<\/a><\/div>\n<\/div>\n\n\n\n<div style=\"height:38px\" aria-hidden=\"true\" class=\"wp-block-spacer\"><\/div>\n\n\n\n<p><\/p>","protected":false},"excerpt":{"rendered":"<p>Le moment est venu ! Nous invitons toutes les familles MDS \u00e0 faire partie de&nbsp;REMEDS, la plateforme de REgistre et d&rsquo;enqu\u00eates M\u00c9Dicales pour les personnes atteintes du syndrome de duplication [&hellip;]<\/p>","protected":false},"author":1,"featured_media":33480,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[7],"tags":[],"class_list":["post-33479","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-actualite"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v25.8 - https:\/\/yoast.com\/wordpress\/plugins\/seo\/ -->\n<title>REMEDS: Le registre international pour les patients atteints du syndrome - DupMECP2<\/title>\n<meta name=\"description\" content=\"REMEDS est un espace o\u00f9 les familles peuvent partager leurs exp\u00e9riences et contribuer directement \u00e0 faire avancer la recherche et les soins. Chaque inscription est un cadeau pour toute la communaut\u00e9, aidant les scientifiques, les m\u00e9decins et les familles \u00e0 se r\u00e9unir pour construire un avenir meilleur.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/dupmecp2.eu\/pl\/remeds-miedzynarodowy-rejestr-zespol-duplikacji-mecp2\/\" \/>\n<meta property=\"og:locale\" content=\"pl_PL\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"REMEDS: Le registre international pour les patients atteints du syndrome - DupMECP2\" \/>\n<meta property=\"og:description\" content=\"REMEDS est un espace o\u00f9 les familles peuvent partager leurs exp\u00e9riences et contribuer directement \u00e0 faire avancer la recherche et les soins. Chaque inscription est un cadeau pour toute la communaut\u00e9, aidant les scientifiques, les m\u00e9decins et les familles \u00e0 se r\u00e9unir pour construire un avenir meilleur.\" \/>\n<meta property=\"og:url\" content=\"https:\/\/dupmecp2.eu\/pl\/remeds-miedzynarodowy-rejestr-zespol-duplikacji-mecp2\/\" \/>\n<meta property=\"og:site_name\" content=\"DupMECP2\" \/>\n<meta property=\"article:published_time\" content=\"2025-09-04T08:45:04+00:00\" \/>\n<meta property=\"article:modified_time\" content=\"2025-09-10T10:55:39+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/09\/REMEDS.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1080\" \/>\n\t<meta property=\"og:image:height\" content=\"1080\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"author\" content=\"Caroline\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Napisane przez\" \/>\n\t<meta name=\"twitter:data1\" content=\"Caroline\" \/>\n\t<meta name=\"twitter:label2\" content=\"Szacowany czas czytania\" \/>\n\t<meta name=\"twitter:data2\" content=\"2 minuty\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\/\/schema.org\",\"@graph\":[{\"@type\":\"Article\",\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/#article\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/\"},\"author\":{\"name\":\"Caroline\",\"@id\":\"https:\/\/dupmecp2.eu\/#\/schema\/person\/b41e8cbba153cd974ee340386af279ee\"},\"headline\":\"REMEDS: Le registre international pour les patients atteints du syndrome\",\"datePublished\":\"2025-09-04T08:45:04+00:00\",\"dateModified\":\"2025-09-10T10:55:39+00:00\",\"mainEntityOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/\"},\"wordCount\":403,\"publisher\":{\"@id\":\"https:\/\/dupmecp2.eu\/#organization\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/09\/REMEDS.jpg\",\"articleSection\":[\"Actualit\u00e9\"],\"inLanguage\":\"pl-PL\"},{\"@type\":\"WebPage\",\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/\",\"url\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/\",\"name\":\"REMEDS: Le registre international pour les patients atteints du syndrome - DupMECP2\",\"isPartOf\":{\"@id\":\"https:\/\/dupmecp2.eu\/#website\"},\"primaryImageOfPage\":{\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/#primaryimage\"},\"image\":{\"@id\":\"https:\/\/dupmecp2.eu\/remeds-registre-international-mecp2-duplication-syndrome\/#primaryimage\"},\"thumbnailUrl\":\"https:\/\/dupmecp2.eu\/wp-content\/uploads\/2025\/09\/REMEDS.jpg\",\"datePublished\":\"2025-09-04T08:45:04+00:00\",\"dateModified\":\"2025-09-10T10:55:39+00:00\",\"description\":\"REMEDS est un espace o\u00f9 les familles peuvent partager leurs exp\u00e9riences et contribuer directement \u00e0 faire avancer la recherche et les soins. 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