{"id":848,"date":"2021-03-05T16:15:22","date_gmt":"2021-03-05T16:15:22","guid":{"rendered":"https:\/\/ring20researchsupport.co.uk\/?page_id=848"},"modified":"2026-07-16T10:51:54","modified_gmt":"2026-07-16T09:51:54","slug":"welcome","status":"publish","type":"page","link":"https:\/\/ring20researchsupport.co.uk\/fr\/for-families\/welcome\/","title":{"rendered":"nouvellement diagnostiqu\u00e9"},"content":{"rendered":"<div data-elementor-type=\"wp-page\" data-elementor-id=\"848\" class=\"elementor elementor-848\" data-elementor-post-type=\"page\">\n\t\t\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-e3217b2 elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"e3217b2\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-02cd945\" data-id=\"02cd945\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-f55ab02 elementor-widget elementor-widget-text-editor\" data-id=\"f55ab02\" 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>Si vous venez de recevoir un diagnostic de syndrome r(20) pour vous-m\u00eame ou votre enfant, nous comprenons que cela peut \u00eatre une p\u00e9riode inqui\u00e9tante pour vous, car vous acceptez cette nouvelle. Ne vous inqui\u00e9tez pas, c&#039;est pourquoi nous sommes l\u00e0 pour vous aider !<\/p><p>Certaines personnes re\u00e7oivent un diagnostic peu de temps apr\u00e8s le d\u00e9but de leurs crises, mais pour la majorit\u00e9 des personnes, elles vivent avec leurs sympt\u00f4mes depuis plusieurs ann\u00e9es. Cela ne facilite pas la d\u00e9couverte que vous avez le syndrome r(20), car dans tous les cas, les informations dont dispose votre \u00e9quipe m\u00e9dicale sont tr\u00e8s limit\u00e9es - en fait, vous pourriez \u00eatre le premier cas de r(20) qu&#039;ils ont trait\u00e9s dans leur carri\u00e8re m\u00e9dicale.<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-cd1e1ae elementor-widget elementor-widget-heading\" data-id=\"cd1e1ae\" 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\">T\u00e9l\u00e9chargez nos packs de bienvenue<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-bce0fa2 elementor-widget elementor-widget-text-editor\" data-id=\"bce0fa2\" 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>Nous avons deux fiches d&#039;accueil t\u00e9l\u00e9chargeables pour vous aider \u00e0 vous tenir au courant de tout ce qui se passe sur Ring20 et \u00e0 vous connecter avec d&#039;autres familles r(20) et \u00e0 participer \u00e0 la conversation - lorsque vous \u00eates pr\u00eat, bien s\u00fbr !<\/p>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ad064eb elementor-widget__width-initial elementor-widget elementor-widget-button\" data-id=\"ad064eb\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/Welcome-to-Ring20_1.pdf\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">rester inform\u00e9<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-7ad0ac3 elementor-widget__width-initial elementor-widget elementor-widget-button\" data-id=\"7ad0ac3\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"button.default\">\n\t\t\t\t\t\t\t\t\t\t<a class=\"elementor-button elementor-button-link elementor-size-sm\" href=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/welcome-pack-2_AW.pdf\">\n\t\t\t\t\t\t<span class=\"elementor-button-content-wrapper\">\n\t\t\t\t\t\t\t\t\t<span class=\"elementor-button-text\">Soyez connect\u00e9s<\/span>\n\t\t\t\t\t<\/span>\n\t\t\t\t\t<\/a>\n\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-8f804ab\" data-id=\"8f804ab\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-784c777 elementor-widget elementor-widget-image\" data-id=\"784c777\" 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 fetchpriority=\"high\" decoding=\"async\" width=\"954\" height=\"1024\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-954x1024.jpg\" class=\"attachment-large size-large wp-image-5259\" alt=\"\" srcset=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-954x1024.jpg 954w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-279x300.jpg 279w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-768x825.jpg 768w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-11x12.jpg 11w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis-600x644.jpg 600w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis.jpg 1407w\" sizes=\"(max-width: 954px) 100vw, 954px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-5604e78 elementor-section-stretched elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"5604e78\" data-element_type=\"section\" data-e-type=\"section\" data-settings=\"{&quot;stretch_section&quot;:&quot;section-stretched&quot;,&quot;background_background&quot;:&quot;classic&quot;}\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-100 elementor-top-column elementor-element elementor-element-85b9fcc\" data-id=\"85b9fcc\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-c2eb29d elementor-widget elementor-widget-heading\" data-id=\"c2eb29d\" 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\">Quelques faits et chiffres sur r(20)<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-86d7735 elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"86d7735\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-globe-europe\" viewbox=\"0 0 496 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M248 8C111 8 0 119 0 256s111 248 248 248 248-111 248-248S385 8 248 8zm200 248c0 22.5-3.9 44.2-10.8 64.4h-20.3c-4.3 0-8.4-1.7-11.4-4.8l-32-32.6c-4.5-4.6-4.5-12.1.1-16.7l12.5-12.5v-8.7c0-3-1.2-5.9-3.3-8l-9.4-9.4c-2.1-2.1-5-3.3-8-3.3h-16c-6.2 0-11.3-5.1-11.3-11.3 0-3 1.2-5.9 3.3-8l9.4-9.4c2.1-2.1 5-3.3 8-3.3h32c6.2 0 11.3-5.1 11.3-11.3v-9.4c0-6.2-5.1-11.3-11.3-11.3h-36.7c-8.8 0-16 7.2-16 16v4.5c0 6.9-4.4 13-10.9 15.2l-31.6 10.5c-3.3 1.1-5.5 4.1-5.5 7.6v2.2c0 4.4-3.6 8-8 8h-16c-4.4 0-8-3.6-8-8s-3.6-8-8-8H247c-3 0-5.8 1.7-7.2 4.4l-9.4 18.7c-2.7 5.4-8.2 8.8-14.3 8.8H194c-8.8 0-16-7.2-16-16V199c0-4.2 1.7-8.3 4.7-11.3l20.1-20.1c4.6-4.6 7.2-10.9 7.2-17.5 0-3.4 2.2-6.5 5.5-7.6l40-13.3c1.7-.6 3.2-1.5 4.4-2.7l26.8-26.8c2.1-2.1 3.3-5 3.3-8 0-6.2-5.1-11.3-11.3-11.3H258l-16 16v8c0 4.4-3.6 8-8 8h-16c-4.4 0-8-3.6-8-8v-20c0-2.5 1.2-4.9 3.2-6.4l28.9-21.7c1.9-.1 3.8-.3 5.7-.3C358.3 56 448 145.7 448 256zM130.1 149.1c0-3 1.2-5.9 3.3-8l25.4-25.4c2.1-2.1 5-3.3 8-3.3 6.2 0 11.3 5.1 11.3 11.3v16c0 3-1.2 5.9-3.3 8l-9.4 9.4c-2.1 2.1-5 3.3-8 3.3h-16c-6.2 0-11.3-5.1-11.3-11.3zm128 306.4v-7.1c0-8.8-7.2-16-16-16h-20.2c-10.8 0-26.7-5.3-35.4-11.8l-22.2-16.7c-11.5-8.6-18.2-22.1-18.2-36.4v-23.9c0-16 8.4-30.8 22.1-39l42.9-25.7c7.1-4.2 15.2-6.5 23.4-6.5h31.2c10.9 0 21.4 3.9 29.6 10.9l43.2 37.1h18.3c8.5 0 16.6 3.4 22.6 9.4l17.3 17.3c3.4 3.4 8.1 5.3 12.9 5.3H423c-32.4 58.9-93.8 99.5-164.9 103.1z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tNous ne savons pas encore combien de personnes ont r(20), bien qu&#039;il y ait environ 200 cas de syndrome r(20) cit\u00e9s dans la litt\u00e9rature m\u00e9dicale \u00e0 travers le monde\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-acc277e elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"acc277e\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-dna\" viewbox=\"0 0 448 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M.1 494.1c-1.1 9.5 6.3 17.8 15.9 17.8l32.3.1c8.1 0 14.9-5.9 16-13.9.7-4.9 1.8-11.1 3.4-18.1H380c1.6 6.9 2.9 13.2 3.5 18.1 1.1 8 7.9 14 16 13.9l32.3-.1c9.6 0 17.1-8.3 15.9-17.8-4.6-37.9-25.6-129-118.9-207.7-17.6 12.4-37.1 24.2-58.5 35.4 6.2 4.6 11.4 9.4 17 14.2H159.7c21.3-18.1 47-35.6 78.7-51.4C410.5 199.1 442.1 65.8 447.9 17.9 449 8.4 441.6.1 432 .1L399.6 0c-8.1 0-14.9 5.9-16 13.9-.7 4.9-1.8 11.1-3.4 18.1H67.8c-1.6-7-2.7-13.1-3.4-18.1-1.1-8-7.9-14-16-13.9L16.1.1C6.5.1-1 8.4.1 17.9 5.3 60.8 31.4 171.8 160 256 31.5 340.2 5.3 451.2.1 494.1zM224 219.6c-25.1-13.7-46.4-28.4-64.3-43.6h128.5c-17.8 15.2-39.1 30-64.2 43.6zM355.1 96c-5.8 10.4-12.8 21.1-21 32H114c-8.3-10.9-15.3-21.6-21-32h262.1zM92.9 416c5.8-10.4 12.8-21.1 21-32h219.4c8.3 10.9 15.4 21.6 21.2 32H92.9z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tLes principaux sympt\u00f4mes de r(20) sont\u00a0:\n<ul><li>crises difficiles \u00e0 traiter (souvent pires la nuit)<\/li>\n<li>troubles cognitifs\/d\u00e9clin (apr\u00e8s le d\u00e9but de la crise)<\/li>\n<li>trouble du comportement<\/li><\/ul>\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-3fbb517 elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"3fbb517\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-question-circle\" viewbox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M504 256c0 136.997-111.043 248-248 248S8 392.997 8 256C8 119.083 119.043 8 256 8s248 111.083 248 248zM262.655 90c-54.497 0-89.255 22.957-116.549 63.758-3.536 5.286-2.353 12.415 2.715 16.258l34.699 26.31c5.205 3.947 12.621 3.008 16.665-2.122 17.864-22.658 30.113-35.797 57.303-35.797 20.429 0 45.698 13.148 45.698 32.958 0 14.976-12.363 22.667-32.534 33.976C247.128 238.528 216 254.941 216 296v4c0 6.627 5.373 12 12 12h56c6.627 0 12-5.373 12-12v-1.333c0-28.462 83.186-29.647 83.186-106.667 0-58.002-60.165-102-116.531-102zM256 338c-25.365 0-46 20.635-46 46 0 25.364 20.635 46 46 46s46-20.636 46-46c0-25.365-20.635-46-46-46z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tLes sympt\u00f4mes varient d&#039;une personne \u00e0 l&#039;autre et il existe un large \u00e9ventail entre ceux qui sont l\u00e9g\u00e8rement touch\u00e9s et ceux qui sont plus gravement touch\u00e9s.\n\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1b67c2f elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"1b67c2f\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-adjust\" viewbox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M8 256c0 136.966 111.033 248 248 248s248-111.034 248-248S392.966 8 256 8 8 119.033 8 256zm248 184V72c101.705 0 184 82.311 184 184 0 101.705-82.311 184-184 184z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tIl existe 2 formes de syndrome r(20) :\n<ul><li>mosa\u00efque (% de cellules affect\u00e9es par l&#039;anneau)<\/li>\n<li>non-mosa\u00efque (anneau trouv\u00e9 dans toutes les cellules - d\u00e9but de crise g\u00e9n\u00e9ralement plus jeune et sympt\u00f4mes plus graves)<\/li>\n<\/ul>\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-1c3ff98 elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"1c3ff98\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-child\" viewbox=\"0 0 384 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M120 72c0-39.765 32.235-72 72-72s72 32.235 72 72c0 39.764-32.235 72-72 72s-72-32.236-72-72zm254.627 1.373c-12.496-12.497-32.758-12.497-45.254 0L242.745 160H141.254L54.627 73.373c-12.496-12.497-32.758-12.497-45.254 0-12.497 12.497-12.497 32.758 0 45.255L104 213.254V480c0 17.673 14.327 32 32 32h16c17.673 0 32-14.327 32-32V368h16v112c0 17.673 14.327 32 32 32h16c17.673 0 32-14.327 32-32V213.254l94.627-94.627c12.497-12.497 12.497-32.757 0-45.254z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tLe syndrome r(20) est rarement h\u00e9r\u00e9ditaire\n\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-9d54fdd elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"9d54fdd\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-pills\" viewbox=\"0 0 576 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M112 32C50.1 32 0 82.1 0 144v224c0 61.9 50.1 112 112 112s112-50.1 112-112V144c0-61.9-50.1-112-112-112zm48 224H64V144c0-26.5 21.5-48 48-48s48 21.5 48 48v112zm139.7-29.7c-3.5-3.5-9.4-3.1-12.3.8-45.3 62.5-40.4 150.1 15.9 206.4 56.3 56.3 143.9 61.2 206.4 15.9 4-2.9 4.3-8.8.8-12.3L299.7 226.3zm229.8-19c-56.3-56.3-143.9-61.2-206.4-15.9-4 2.9-4.3 8.8-.8 12.3l210.8 210.8c3.5 3.5 9.4 3.1 12.3-.8 45.3-62.6 40.5-150.1-15.9-206.4z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tIl n&#039;y a pas de traitement recommand\u00e9 pour le syndrome r(20)\n\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-ae3ffbc elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"ae3ffbc\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-brain\" viewbox=\"0 0 576 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M208 0c-29.9 0-54.7 20.5-61.8 48.2-.8 0-1.4-.2-2.2-.2-35.3 0-64 28.7-64 64 0 4.8.6 9.5 1.7 14C52.5 138 32 166.6 32 200c0 12.6 3.2 24.3 8.3 34.9C16.3 248.7 0 274.3 0 304c0 33.3 20.4 61.9 49.4 73.9-.9 4.6-1.4 9.3-1.4 14.1 0 39.8 32.2 72 72 72 4.1 0 8.1-.5 12-1.2 9.6 28.5 36.2 49.2 68 49.2 39.8 0 72-32.2 72-72V64c0-35.3-28.7-64-64-64zm368 304c0-29.7-16.3-55.3-40.3-69.1 5.2-10.6 8.3-22.3 8.3-34.9 0-33.4-20.5-62-49.7-74 1-4.5 1.7-9.2 1.7-14 0-35.3-28.7-64-64-64-.8 0-1.5.2-2.2.2C422.7 20.5 397.9 0 368 0c-35.3 0-64 28.6-64 64v376c0 39.8 32.2 72 72 72 31.8 0 58.4-20.7 68-49.2 3.9.7 7.9 1.2 12 1.2 39.8 0 72-32.2 72-72 0-4.8-.5-9.5-1.4-14.1 29-12 49.4-40.6 49.4-73.9z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tNous savons que les personnes atteintes du syndrome r(20) ont des convulsions, mais nous ne savons pas encore pourquoi la formation d&#039;anneaux les provoque.\n\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-832d8d8 elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"832d8d8\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-clock\" viewbox=\"0 0 512 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M256,8C119,8,8,119,8,256S119,504,256,504,504,393,504,256,393,8,256,8Zm92.49,313h0l-20,25a16,16,0,0,1-22.49,2.5h0l-67-49.72a40,40,0,0,1-15-31.23V112a16,16,0,0,1,16-16h32a16,16,0,0,1,16,16V256l58,42.5A16,16,0,0,1,348.49,321Z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tNous ne pouvons pas encore d\u00e9crire comment la maladie \u00e9voluera dans le temps\n\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-5eff064 elementor-widget__width-initial elementor-widget-tablet__width-initial elementor-widget-mobile__width-inherit elementor-view-default elementor-position-block-start elementor-mobile-position-block-start elementor-widget elementor-widget-icon-box\" data-id=\"5eff064\" data-element_type=\"widget\" data-e-type=\"widget\" data-widget_type=\"icon-box.default\">\n\t\t\t\t\t\t\t<div class=\"elementor-icon-box-wrapper\">\n\n\t\t\t\t\t\t<div class=\"elementor-icon-box-icon\">\n\t\t\t\t<span  class=\"elementor-icon\">\n\t\t\t\t<svg aria-hidden=\"true\" class=\"e-font-icon-svg e-fas-user-plus\" viewbox=\"0 0 640 512\" xmlns=\"http:\/\/www.w3.org\/2000\/svg\"><path d=\"M624 208h-64v-64c0-8.8-7.2-16-16-16h-32c-8.8 0-16 7.2-16 16v64h-64c-8.8 0-16 7.2-16 16v32c0 8.8 7.2 16 16 16h64v64c0 8.8 7.2 16 16 16h32c8.8 0 16-7.2 16-16v-64h64c8.8 0 16-7.2 16-16v-32c0-8.8-7.2-16-16-16zm-400 48c70.7 0 128-57.3 128-128S294.7 0 224 0 96 57.3 96 128s57.3 128 128 128zm89.6 32h-16.7c-22.2 10.2-46.9 16-72.9 16s-50.6-5.8-72.9-16h-16.7C60.2 288 0 348.2 0 422.4V464c0 26.5 21.5 48 48 48h352c26.5 0 48-21.5 48-48v-41.6c0-74.2-60.2-134.4-134.4-134.4z\"><\/path><\/svg>\t\t\t\t<\/span>\n\t\t\t<\/div>\n\t\t\t\n\t\t\t\t\t\t<div class=\"elementor-icon-box-content\">\n\n\t\t\t\t\n\t\t\t\t\t\t\t\t\t<p class=\"elementor-icon-box-description\">\n\t\t\t\t\t\tDe nombreuses personnes atteintes du syndrome r(20) auront besoin de soutien dans leurs \u00e9tudes et\/ou leur travail\t\t\t\t\t<\/p>\n\t\t\t\t\n\t\t\t<\/div>\n\t\t\t\n\t\t<\/div>\n\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<section class=\"elementor-section elementor-top-section elementor-element elementor-element-fc355aa elementor-section-boxed elementor-section-height-default elementor-section-height-default\" data-id=\"fc355aa\" data-element_type=\"section\" data-e-type=\"section\">\n\t\t\t\t\t\t<div class=\"elementor-container elementor-column-gap-default\">\n\t\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-138fe99\" data-id=\"138fe99\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-bb05a6a elementor-widget elementor-widget-heading\" data-id=\"bb05a6a\" 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\">Ring20 - ici pour vous aider !<\/h2>\t\t\t\t<\/div>\n\t\t\t\t<div class=\"elementor-element elementor-element-b24b3e3 elementor-widget elementor-widget-text-editor\" data-id=\"b24b3e3\" 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>Bien qu&#039;il y ait beaucoup de choses que nous ne savons pas encore sur le syndrome r(20), ses causes et comment traiter les gens, ne d\u00e9sesp\u00e9rez pas. Il y a beaucoup de choses que nous pouvons faire et faisons pour vous soutenir, vous et des familles comme vous\u2026<\/p>\n<p>Lorsque vous \u00eates pr\u00eat, consultez les pages suivantes sur notre site Web\u00a0:<\/p>\n<ul>\n<li><a href=\"https:\/\/ring20researchsupport.co.uk\/fr\/for-families\/flo_project\/\" target=\"_blank\">Projet de liaison avec les familles<\/a>&nbsp;page pour un soutien personnalis\u00e9 de notre agente de liaison avec les familles, Sarah&nbsp;<\/li>\n<li><a href=\"https:\/\/ring20researchsupport.co.uk\/fr\/r20-syndrome\/\">syndrome r(20)<\/a> pages pour tout ce que vous devez savoir sur votre diagnostic<\/li>\n<li><a href=\"https:\/\/ring20researchsupport.co.uk\/fr\/for-families\/\">Pour les familles<\/a> pages expliquant comment Ring20 peut vous aider, vous et votre famille<\/li>\n<li><a href=\"https:\/\/ring20researchsupport.co.uk\/fr\/research\/\">Rechercher<\/a> pages pour des projets de recherche en cours pour essayer de trouver une am\u00e9lioration dans le diagnostic, le traitement et la gestion du r(20)<\/li>\n<\/ul>\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t<div class=\"elementor-column elementor-col-50 elementor-top-column elementor-element elementor-element-95383da\" data-id=\"95383da\" data-element_type=\"column\" data-e-type=\"column\">\n\t\t\t<div class=\"elementor-widget-wrap elementor-element-populated\">\n\t\t\t\t\t\t<div class=\"elementor-element elementor-element-214eda9 elementor-widget elementor-widget-image\" data-id=\"214eda9\" 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=\"1024\" height=\"391\" src=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-1024x391.jpg\" class=\"attachment-large size-large wp-image-6299\" alt=\"\" srcset=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-1024x391.jpg 1024w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-300x115.jpg 300w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-768x293.jpg 768w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-1536x586.jpg 1536w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-2048x782.jpg 2048w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-16x6.jpg 16w, https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/05\/support-group-600x229.jpg 600w\" sizes=\"(max-width: 1024px) 100vw, 1024px\" \/>\t\t\t\t\t\t\t\t\t\t\t\t\t\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/div>\n\t\t\t\t\t<\/div>\n\t\t<\/section>\n\t\t\t\t<\/div>","protected":false},"excerpt":{"rendered":"<p>If you&#8217;ve just received a diagnosis of r(20) syndrome for yourself or your child we understand that this can be a worrying time for you, as you come to terms with this news. Don&#8217;t worry, that&#8217;s why we are here to help you! Some people receive a diagnosis within a short amount of time after [&hellip;]<\/p>\n","protected":false},"author":3,"featured_media":0,"parent":74,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","meta":{"site-sidebar-layout":"no-sidebar","site-content-layout":"page-builder","ast-site-content-layout":"default","site-content-style":"default","site-sidebar-style":"default","ast-global-header-display":"","ast-banner-title-visibility":"","ast-main-header-display":"","ast-hfb-above-header-display":"","ast-hfb-below-header-display":"","ast-hfb-mobile-header-display":"","site-post-title":"disabled","ast-breadcrumbs-content":"","ast-featured-img":"disabled","footer-sml-layout":"","ast-disable-related-posts":"","theme-transparent-header-meta":"default","adv-header-id-meta":"","stick-header-meta":"","header-above-stick-meta":"","header-main-stick-meta":"","header-below-stick-meta":"","astra-migrate-meta-layouts":"default","ast-page-background-enabled":"default","ast-page-background-meta":{"desktop":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"ast-content-background-meta":{"desktop":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"tablet":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""},"mobile":{"background-color":"var(--ast-global-color-5)","background-image":"","background-repeat":"repeat","background-position":"center center","background-size":"auto","background-attachment":"scroll","background-type":"","background-media":"","overlay-type":"","overlay-color":"","overlay-opacity":"","overlay-gradient":""}},"footnotes":""},"class_list":["post-848","page","type-page","status-publish","hentry"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Newly Diagnosed - Ring20 Research and Support UK CIO<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/ring20researchsupport.co.uk\/fr\/for-families\/welcome\/\" \/>\n<meta property=\"og:locale\" content=\"fr_FR\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Newly Diagnosed - Ring20 Research and Support UK CIO\" \/>\n<meta property=\"og:description\" content=\"If you&#8217;ve just received a diagnosis of r(20) syndrome for yourself or your child we understand that this can be a worrying time for you, as you come to terms with this news. Don&#8217;t worry, that&#8217;s why we are here to help you! Some people receive a diagnosis within a short amount of time after [&hellip;]\" \/>\n<meta property=\"og:url\" content=\"https:\/\/ring20researchsupport.co.uk\/fr\/for-families\/welcome\/\" \/>\n<meta property=\"og:site_name\" content=\"Ring20 Research and Support UK CIO\" \/>\n<meta property=\"article:modified_time\" content=\"2026-07-16T09:51:54+00:00\" \/>\n<meta property=\"og:image\" content=\"https:\/\/ring20researchsupport.co.uk\/wp-content\/uploads\/2021\/04\/diagnosis.jpg\" \/>\n\t<meta property=\"og:image:width\" content=\"1407\" \/>\n\t<meta property=\"og:image:height\" content=\"1511\" \/>\n\t<meta property=\"og:image:type\" content=\"image\/jpeg\" \/>\n<meta name=\"twitter:card\" content=\"summary_large_image\" \/>\n<meta name=\"twitter:label1\" content=\"Dur\u00e9e de lecture estim\u00e9e\" \/>\n\t<meta name=\"twitter:data1\" content=\"2 minutes\" \/>\n<script type=\"application\/ld+json\" class=\"yoast-schema-graph\">{\"@context\":\"https:\\\/\\\/schema.org\",\"@graph\":[{\"@type\":\"WebPage\",\"@id\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/for-families\\\/welcome\\\/\",\"url\":\"https:\\\/\\\/ring20researchsupport.co.uk\\\/for-families\\\/welcome\\\/\",\"name\":\"Newly Diagnosed - 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