{"id":4447,"date":"2021-03-02T14:41:02","date_gmt":"2021-03-02T13:41:02","guid":{"rendered":"https:\/\/www.alpha1-deutschland.org\/?p=4447"},"modified":"2021-03-02T14:41:02","modified_gmt":"2021-03-02T13:41:02","slug":"28-02-2021-tag-der-seltenen-erkrankungen","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/28-02-2021-tag-der-seltenen-erkrankungen","title":{"rendered":"February 28, 2021 Rare Disease Day"},"content":{"rendered":"<div id=\"fws_6a90016cb604e\"  data-column-margin=\"default\" data-midnight=\"dark\" data-top-percent=\"3%\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: calc(100vw * 0.03); padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding inherit_tablet inherit_phone\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<h1><span style=\"color: #004267;\">February 28, 2021 Rare Disease Day<\/span><\/h1>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"height: 50px;\" class=\"divider\"><\/div><\/div><div class=\"vc_separator wpb_content_element vc_separator_align_center vc_sep_width_100 vc_sep_border_width_5 vc_sep_pos_align_center vc_sep_color_grey wpb_content_element vc_separator-has-text\" ><span class=\"vc_sep_holder vc_sep_holder_l\"><span class=\"vc_sep_line\"><\/span><\/span><h4>Author<\/h4><span class=\"vc_sep_holder vc_sep_holder_r\"><span class=\"vc_sep_line\"><\/span><\/span>\n<\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p><strong>Udo Held, Anke Dietze<\/strong> Self-help group Saxony &amp; Saxony-Anhalt<\/p>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"margin-top: 25px; height: 5px; margin-bottom: 25px;\" data-width=\"100%\" data-animate=\"\" data-animation-delay=\"\" data-color=\"default\" class=\"divider-border\"><\/div><\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p>The pandemic has made things difficult, but we were able to hold Rare Disease Day online in 2021. More than 60 participants took part in the online video chat event. This also allowed us to reconnect with other support groups for people with similar conditions.<\/p>\n<p>Furthermore, we were able to learn new information from the Central German Competence Network for Rare Diseases (ovgu.de)!<\/p>\n<p>Since 2014, we, the self-help group for rare diseases in Saxony and Saxony-Anhalt, have had a regular spot at the Dessau Municipal Hospital for Rare Disease Day. It was a given that we would participate again this year. Of course, it&#039;s not the same as in previous years, as the personal interaction is simply missing.<\/p>\n<p>The screenshots were taken with the participants&#039; consent. A report on the event can be found in the MDR Saxony-Anhalt regional magazine, airing from 7:00 PM. (MDR Media Library)<\/p>\n<p>Furthermore, the regional television station Halle and Dessau-Ro\u00dflau participated in the event.<\/p>\n<p>Best regards<\/p>\n<p>Udo Held<br \/>\nAnke Dietze<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t<div id=\"fws_6a90016cb7a55\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: 0px; padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding inherit_tablet inherit_phone\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t\n\t<div class=\"wpb_gallery wpb_content_element clearfix\">\n\t\t<div class=\"wpb_wrapper\"><div class=\"wpb_gallery_slidesflickity_style\" data-onclick=\"link_no\" data-interval=\"5\"><div class=\"nectar-flickity not-initialized\" role=\"region\" aria-roledescription=\"carousel\" aria-label=\"Image gallery\"  data-touch-icon-color=\"default\" data-stagger=\"\" data-drag-scale=\"\" data-overflow=\"hidden\" data-wrap=\"wrap\" data-spacing=\"default\" data-shadow=\"none\" data-autoplay=\"\" data-autoplay-dur=\"\" data-free-scroll=\"\" data-controls=\"pagination\" data-desktop-columns=\"1\" data-small-desktop-columns=\"1\" data-tablet-columns=\"1\" data-phone-columns=\"default\"><div class=\"flickity-viewport\"> <div class=\"flickity-slider\"><div class=\"cell\" data-lazy=\"false\"><img decoding=\"async\" class=\"skip-lazy nectar-lazy\" src=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Tag-der-Seltenen-Erkrankungen-3-600x400.jpg\" width=\"600\" height=\"400\" alt=\"Tag-der-Seltenen-Erkrankungen-3\" title=\"Rare Disease Day 3\" loading=\"lazy\" \/><\/div><div class=\"cell\" data-lazy=\"false\"><img decoding=\"async\" class=\"skip-lazy nectar-lazy\" src=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Tag-der-Seltenen-Erkrankungen-2-600x400.jpg\" width=\"600\" height=\"400\" alt=\"Tag-der-Seltenen-Erkrankungen-2\" title=\"Rare Disease Day 2\" loading=\"lazy\" \/><\/div><div class=\"cell\" data-lazy=\"false\"><img decoding=\"async\" class=\"skip-lazy nectar-lazy\" src=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Tag-der-Seltenen-Erkrankungen-600x400.jpg\" width=\"600\" height=\"400\" alt=\"Tag-der-Seltenen-Erkrankungen\" title=\"Rare Disease Day\" loading=\"lazy\" \/><\/div><\/div><\/div><\/div><\/div>\n\t\t<\/div> \n\t<\/div> \n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t<div id=\"fws_6a90016cbfd82\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row\"  style=\"padding-top: 0px; padding-bottom: 0px; \"><div class=\"row-bg-wrap\" data-bg-animation=\"none\" data-bg-animation-delay=\"\" data-bg-overlay=\"false\"><div class=\"inner-wrap row-bg-layer\" ><div class=\"row-bg viewport-desktop\"  style=\"\"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 dark left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding inherit_tablet inherit_phone\"  data-padding-pos=\"all\" data-has-bg-color=\"false\" data-bg-color=\"\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" >\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<h2><span style=\"color: #004267;\">Presentation: Rare Disease Day \u2013 we&#039;re participating!<\/span><\/h2>\n<\/div>\n\n\n\n<div class=\"divider-wrap\" data-alignment=\"default\"><div style=\"height: 20px;\" class=\"divider\"><\/div><\/div>\n\t<div class=\"wpb_raw_code wpb_raw_html wpb_content_element\" >\n\t\t<div class=\"wpb_wrapper\">\n\t\t\t <div class=\"brlbs-cmpnt-container brlbs-cmpnt-content-blocker brlbs-cmpnt-with-individual-styles\" data-borlabs-cookie-content-blocker-id=\"default\" data-borlabs-cookie-content=\"PGlmcmFtZSBsb2FkaW5nPSJsYXp5IiBzcmM9Imh0dHBzOi8vZG9jcy5nb29nbGUuY29tL3ByZXNlbnRhdGlvbi9kL2UvMlBBQ1gtMXZTVWs1c05iNE91THNjd3BOYlhqelk1SWpKaWVrY2lxLUdPUkV0RXZGeTgxYzBqclFzRGZ1UHFNalBtd3I5ZXF0T1kzUzBITUVrRmFuR2QvZW1iZWQ\/c3RhcnQ9ZmFsc2UmbG9vcD1mYWxzZSZkZWxheW1zPTMwMDAiIGZyYW1lYm9yZGVyPSIwIiB3aWR0aD0iMTA1OCIgaGVpZ2h0PSI4MjMiIGFsbG93ZnVsbHNjcmVlbj0idHJ1ZSIgbW96YWxsb3dmdWxsc2NyZWVuPSJ0cnVlIiB3ZWJraXRhbGxvd2Z1bGxzY3JlZW49InRydWUiPjwvaWZyYW1lPg==\"><div class=\"brlbs-cmpnt-cb-preset-a\"> <p class=\"brlbs-cmpnt-cb-description\">You are currently viewing a placeholder content from <strong>default<\/strong>. To access the actual content, click the button below. Please note that doing so will share data with third-party providers.<\/p> <div class=\"brlbs-cmpnt-cb-buttons\"> <a class=\"brlbs-cmpnt-cb-btn\" href=\"#\" data-borlabs-cookie-unblock role=\"button\">Unblock content<\/a> <a class=\"brlbs-cmpnt-cb-btn\" href=\"#\" data-borlabs-cookie-accept-service role=\"button\" style=\"display: none\">Accept required service and unblock content<\/a> <\/div> <a class=\"brlbs-cmpnt-cb-provider-toggle\" href=\"#\" data-borlabs-cookie-show-provider-information role=\"button\">More information<\/a> <\/div><\/div>\n\t\t<\/div>\n\t<\/div>\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"February 28, 2021 Rare Disease Day Authors: Udo Held, Anke Dietze Self-Help Group Saxony &amp; Saxony-Anhalt Corona isn&#039;t making it easy for us, but we&#039;ve still managed to observe Rare Disease Day this year...","protected":false},"author":1,"featured_media":4087,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,19],"tags":[],"class_list":["post-4447","post","type-post","status-publish","format-standard","has-post-thumbnail","category-allgemein","category-shg-sachsen-sachsen-anhalt"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.3 - 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