{"id":7158,"date":"2025-11-23T09:53:15","date_gmt":"2025-11-23T08:53:15","guid":{"rendered":"https:\/\/alpha1-deutschland.org\/?p=7158"},"modified":"2026-04-23T09:54:36","modified_gmt":"2026-04-23T07:54:36","slug":"angebote-fuer-familien-mit-alpha-1-kindern","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/angebote-fuer-familien-mit-alpha-1-kindern","title":{"rendered":"There&#039;s still more to come..."},"content":{"rendered":"<div id=\"fws_6aa9058e4e299\"  data-column-margin=\"default\" data-midnight=\"dark\"  class=\"wpb_row vc_row-fluid vc_row full-width-section\"  style=\"padding-top: 0px; padding-bottom: 50px; \"><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 flex_gap_desktop_10px\"  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<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 style=\"font-weight: 400;\"><strong>Gabi Niethammer, as appeared in <a href=\"https:\/\/alpha1-deutschland.org\/en\/alpha1-journal\/\">Alpha1 Journal 2\/2025<\/a>.<\/strong><\/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><strong>Dear families, <\/strong><\/p>\n<p><strong>It&#039;s time to focus more on our youngest, smallest, and youngest Alphas again. As the contact person for families with affected children and young people (including those with mild cognitive impairment), I&#039;d like to share what we have planned for the near future: <\/strong><\/p>\n<ul>\n<li>The SHG KIJU is launching as a purely virtual self-help group and is intended for all German-speaking families, thus also targeting families from Austria and Switzerland.<\/li>\n<li>I&#039;m setting up a dedicated email list for this purpose, which I hope will continue to grow. You&#039;ll receive relevant information and invitations here. Do you have interesting tips, experiences, or memorable stories that might interest everyone? Write to me at shg.kiju@alpha1-deutschland.org and I&#039;ll check if it would be beneficial for the group.<\/li>\n<li>Would you like to connect with other families and find them in similar situations? I&#039;d be happy to prepare a questionnaire that you can fill out if you&#039;re interested, so we can connect with other families if needed. Of course, your data will only be shared with your consent.<\/li>\n<li>On Tuesday, January 13, 2026, at 8 p.m., a virtual meeting will take place via Zoom. Dr. Alexander Weigert and Dr. David Katzer from the University Hospital Bonn will give a brief presentation on interesting facts about the genetic defect, introduce their important Alpha1 Children&#039;s Registry, and answer all your questions. If desired, the evening can also continue without medical support, allowing you to use the time to get to know each other better.<\/li>\n<li>At our Alpha1 Information Day on April 25, 2026, in Bad Wildungen, a two-hour workshop focusing on children and adolescents will take place in the afternoon. This workshop will be led by Dr. Marie Korell and Dr. Eva-Doreen Pfister, both from Hannover Medical School. Dr. Korell, a resident physician, is planning a translational research project on potential influencing factors on the course of Alpha-1 in children and adolescents.<\/li>\n<\/ul>\n<p>Professor Rainer Ganschow from the University Hospital Bonn commissioned a short but worthwhile video featuring a patient&#039;s story. Thank you, dear Emely, for your courage!<\/p>\n<p>I look forward to exchanging ideas with you all.<\/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_6aa9058e4fd6b\"  data-column-margin=\"default\" data-midnight=\"light\"  class=\"wpb_row vc_row-fluid vc_row has-row-bg-color  right_padding_30px left_padding_30px\"  style=\"padding-top: 30px; padding-bottom: 30px; --row-bg-color: #004267;\"><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 using-bg-color\"  style=\"background-color: #004267; \"><\/div><\/div><\/div><div class=\"row_col_wrap_12 col span_12 light left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col no-extra-padding inherit_tablet inherit_phone flex_gap_desktop_10px\"  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>Video with patient story<\/h2>\n<p>by Prof. Rainer Ganschow, University Hospital Bonn<\/p>\n<\/div>\n\n\n\n<a class=\"nectar-button large regular accent-color  regular-button\"  role=\"button\" style=\"margin-top: 50px; margin-bottom: 50px; \" target=\"_blank\" href=\"https:\/\/vimeo.com\/1108349985\" data-color-override=\"false\" data-hover-color-override=\"false\" data-hover-text-color-override=\"#fff\"><span>WATCH VIDEO<\/span><\/a>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"Author Gabi Niethammer, as published in Alpha1 Journal 2\/2025. Dear families, it&#039;s time to focus more on our youngest, little ones, and young Alphas again. As a contact person for...","protected":false},"author":1,"featured_media":7161,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24,44],"tags":[],"class_list":["post-7158","post","type-post","status-publish","format-standard","has-post-thumbnail","category-alpha1-journal","category-kinder"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.4 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Da geht noch was... - Ihr Online Portal f\u00fcr Mitglieder und Interessierte<\/title>\n<meta name=\"description\" content=\"nterst\u00fctzung, Austausch &amp; Infos f\u00fcr Familien mit betroffenen Kindern. 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