{"id":6783,"date":"2023-06-22T10:30:05","date_gmt":"2023-06-22T08:30:05","guid":{"rendered":"https:\/\/alpha1-deutschland.org\/?p=6783"},"modified":"2025-08-19T10:34:56","modified_gmt":"2025-08-19T08:34:56","slug":"alpha1-journal-ausgabe-1-2023","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/alpha1-journal-ausgabe-1-2023","title":{"rendered":"Ausgabe 1\/2023"},"content":{"rendered":"<div id=\"fws_6a739e0232a2e\"  data-column-margin=\"none\" data-midnight=\"dark\" data-bottom-percent=\"4%\"  class=\"wpb_row vc_row-fluid vc_row full-width-section vc_row-o-equal-height vc_row-flex vc_row-o-content-middle\"  style=\"padding-top: 0px; padding-bottom: calc(100vw * 0.04); \"><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 style=\"\" class=\"vc_col-sm-7 wpb_column column_container vc_column_container col padding-12-percent inherit_tablet inherit_phone\" data-using-bg=\"true\" data-padding-pos=\"all\" data-has-bg-color=\"true\" data-bg-color=\"#91d8ff\" data-bg-opacity=\"1\" data-animation=\"\" data-delay=\"0\" >\n\t\t<div class=\"vc_column-inner\" ><div class=\"column-bg-overlay-wrap column-bg-layer\" data-bg-animation=\"none\"><div class=\"column-bg-overlay\" style=\"opacity: 1; background-color: #91d8ff;\"><\/div><\/div>\n\t\t\t<div class=\"wpb_wrapper\">\n\t\t\t\t<div id=\"fws_6a739e0233767\" data-midnight=\"\" data-column-margin=\"default\" class=\"wpb_row vc_row-fluid vc_row inner_row\"  style=\"\"><div class=\"row-bg-wrap\"> <div class=\"row-bg\" ><\/div> <\/div><div class=\"row_col_wrap_12_inner col span_12  left\">\n\t<div  class=\"vc_col-sm-12 vc_col-lg-11 vc_col-md-11 vc_col-xs-12 wpb_column column_container vc_column_container col child_column 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<div class=\"wpb_wrapper\">\n\t\t\t\n<div class=\"wpb_text_column wpb_content_element  vc_custom_1755592260693\" >\n\t<p><strong>Alpha1-Journal Ausgabe 1\/2023<\/strong><\/p>\n<\/div>\n\n\n\n\n\t\t<\/div> \n\t<\/div>\n\t<\/div> \n<\/div><\/div><div id=\"fws_6a739e02342a9\" data-midnight=\"\" data-column-margin=\"none\" class=\"wpb_row vc_row-fluid vc_row inner_row\"  style=\"padding-bottom: 10px; \"><div class=\"row-bg-wrap\"> <div class=\"row-bg\" ><\/div> <\/div><div class=\"row_col_wrap_12_inner col span_12  left\">\n\t<div  class=\"vc_col-sm-12 vc_col-lg-11 vc_col-md-11 vc_col-xs-12 wpb_column column_container vc_column_container col child_column 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<div class=\"wpb_wrapper\">\n\t\t\t<div class=\"nectar-split-heading\" data-align=\"default\" data-m-align=\"inherit\" data-text-effect=\"default\" data-animation-type=\"line-reveal-by-space\" data-animation-delay=\"0\" data-animation-offset=\"\" data-m-rm-animation=\"\" data-stagger=\"\" data-custom-font-size=\"false\" ><h1 >The wait was over: a full house and a great atmosphere at the 20+2 anniversary celebration in Bad Wildungen<\/h1><\/div>\n\t\t<\/div> \n\t<\/div>\n\t<\/div> \n<\/div><\/div><div id=\"fws_6a739e0234d4f\" data-midnight=\"\" data-column-margin=\"default\" class=\"wpb_row vc_row-fluid vc_row inner_row\"  style=\"\"><div class=\"row-bg-wrap\"> <div class=\"row-bg\" ><\/div> <\/div><div class=\"row_col_wrap_12_inner col span_12  left\">\n\t<div style=\"margin-top: 5%; \" class=\"vc_col-sm-12 vc_col-lg-11 vc_col-md-11 vc_col-xs-12 wpb_column column_container vc_column_container col child_column 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<div class=\"wpb_wrapper\">\n\t\t\t\n<div class=\"wpb_text_column wpb_content_element  vc_custom_1755592322053\" >\n\t<p>This issue contains:<\/p>\n<ul>\n<li>Die Highlights vom Infotag 2023<\/li>\n<li>Ank\u00fcndigung: Alpha1 Kinder &amp; Jugendtag 2023<\/li>\n<li>L\u00f6sung f\u00fcr Brillentr\u00e4ger: Sauerstoffschlauch einfach integrieren<\/li>\n<li>Lip brakes with pleasure<\/li>\n<li>Neue Webinar-Reihe: Alles, was (Sozial) Recht ist<\/li>\n<li>Plasmaspende: Alpha-1-Reportage kl\u00e4rt auf<\/li>\n<\/ul>\n<\/div>\n\n\n\n\n\t\t<\/div> \n\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n\n\t<div  class=\"vc_col-sm-5 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<div id=\"fws_6a739e0235cf5\" data-midnight=\"\" data-column-margin=\"default\" class=\"wpb_row vc_row-fluid vc_row inner_row\"  style=\"\"><div class=\"row-bg-wrap\"> <div class=\"row-bg\" ><\/div> <\/div><div class=\"row_col_wrap_12_inner col span_12  left\">\n\t<div  class=\"vc_col-sm-12 wpb_column column_container vc_column_container col child_column 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<div class=\"wpb_wrapper\">\n\t\t\t<div class=\"img-with-aniamtion-wrap right\" data-max-width=\"110%\" data-max-width-mobile=\"default\" data-shadow=\"none\" data-animation=\"grow-in\" >\n      <div class=\"inner\">\n        <div class=\"hover-wrap\"> \n          <div class=\"hover-wrap-inner\">\n            <a href=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Alpha1-Journal-1-2023.jpg\" class=\"pp right\" title=\"\">\n              <img loading=\"lazy\" decoding=\"async\" class=\"img-with-animation skip-lazy\" data-delay=\"0\" height=\"1219\" width=\"930\" data-animation=\"grow-in\" src=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Alpha1-Journal-1-2023.jpg\" alt=\"Cover Alpha1-Journal 1\/2023\" srcset=\"https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Alpha1-Journal-1-2023.jpg 930w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Alpha1-Journal-1-2023-229x300.jpg 229w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Alpha1-Journal-1-2023-781x1024.jpg 781w, https:\/\/alpha1-deutschland.org\/wp-content\/uploads\/Alpha1-Journal-1-2023-768x1007.jpg 768w\" sizes=\"auto, (max-width: 930px) 100vw, 930px\" \/>\n            <\/a>\n          <\/div>\n        <\/div>\n         \n      <\/div>\n      <\/div>\n\t\t<\/div> \n\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>\n\t\t<div id=\"fws_6a739e0237511\"  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<div class=\"nectar-split-heading\" data-align=\"default\" data-m-align=\"inherit\" data-text-effect=\"none\" data-animation-type=\"line-reveal-by-space\" data-animation-delay=\"0\" data-animation-offset=\"\" data-m-rm-animation=\"\" data-stagger=\"\" data-custom-font-size=\"false\" ><h2 >Download the journal as a PDF:<\/h2><\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<div class='w3eden'><!-- WPDM Link Template: Default Template -->\n\n<div class=\"link-template-default card mb-2\">\n    <div class=\"card-body\">\n        <div class=\"media\">\n            <div class=\"mr-3 img-48\"><img decoding=\"async\" class=\"wpdm_icon\" alt=\"Icon\" src=\"https:\/\/alpha1-deutschland.org\/wp-content\/plugins\/download-manager\/assets\/file-type-icons\/pdf.svg\" \/><\/div>\n            <div class=\"media-body\">\n                <h3 class=\"package-title\"><a href='https:\/\/alpha1-deutschland.org\/en\/download\/alpha1-journal-01-23'>Alpha1 Journal 01\/23<\/a><\/h3>\n                <div class=\"text-muted text-small\"><i class=\"fas fa-copy\"><\/i> 1 file(s) <i class=\"fas fa-hdd ml-3\"><\/i> 37.82 MB<\/div>\n            <\/div>\n            <div class=\"ml-3\">\n                <a class='wpdm-download-link download-on-click btn btn-link btn-xs'  rel='nofollow' href='#' data-downloadurl=\"https:\/\/alpha1-deutschland.org\/en\/download\/alpha1-journal-01-23?wpdmdl=5736&refresh=6a739e0239f401785961986\">Download<\/a>\n            <\/div>\n        <\/div>\n    <\/div>\n<\/div>\n\n<\/div>\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_6a739e0261489\"  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<div class=\"nectar-split-heading\" data-align=\"default\" data-m-align=\"inherit\" data-text-effect=\"none\" data-animation-type=\"line-reveal-by-space\" data-animation-delay=\"0\" data-animation-offset=\"\" data-m-rm-animation=\"\" data-stagger=\"\" data-custom-font-size=\"false\" ><h2 >In this issue<\/h2><\/div>\n<div class=\"wpb_text_column wpb_content_element\" >\n\t<p>03 Preface<\/p>\n<p>06 Service: Executive Board and Advisory Boards<\/p>\n<p>08 Vorgestellt: Katrin Fell \u2013 Unterst\u00fctzung des Vorstandes<\/p>\n<h3>ON A PERSONAL NOTE:<\/h3>\n<p>09 Terminvorschau 2023<\/p>\n<p>10 20 Jahre \u2013 Leben im Verein Alpha1<\/p>\n<p>11 Alpha1 Kinder und Jugendtag 2023<\/p>\n<h3>DOCUMENTED FOR YOU:<\/h3>\n<p>12 Es ist schon etwas Besonderes \u2026<\/p>\n<p>13 Alpha1-Infotag in Bad Wildungen<\/p>\n<p>14 Impressionen der Jubil\u00e4umsveranstaltung<\/p>\n<p>16 Univ.-Prof. Strnad : Alpha-1: Wie die Leber wiederentdeckt wurde<\/p>\n<p>18 Prof. Dr. Vogelmeier: Substitution mit Alpha1 \u2013 von den Anf\u00e4ngen bis heute<\/p>\n<p>20 Dr. Janciauskiene-Wallmark: Entdeckung, Forschung und Entwicklung bei Alpha-1<\/p>\n<p>22 Dr. Kardorff: Alpha-1 \u2013 Besonderheiten bei Kindern und Jugendlichen<\/p>\n<p>25 Prof. Dr. Koczulla: Bewegung und Rehabilitation bei Alpha-1<\/p>\n<p>27 Dr. Jarosch: Personalisierte Therapie PROMISE<\/p>\n<p>30 Dr. Rupp: Alpha1 &amp; Lunge \u2013 mehr als COPD und Emphysem<\/p>\n<p>33 Geniale L\u00f6sung f\u00fcr Brillentr\u00e4ger Umfrage: Informationsangebote auf dem Vormarsch<\/p>\n<h3>ON A PERSONAL NOTE:<\/h3>\n<p>35 Alpha-1-Reportage: Die lebenswichtige Rolle von Plasmaspenden<\/p>\n<p>36 Webinar-Reihe: Alles, was (Sozial)Recht ist ALPHA-1 &amp; DIE PSYCHE:<\/p>\n<p>37 Lippenbremse mit Lust &#8230;<\/p>\n<p>41 Gedenken<\/p>\n<h3>ALPHA1 UNTERWEGS &amp; ALPHA1 INTERNATIONAL:<\/h3>\n<p>42 Kurzbericht Alpha1-Patiententag in Heidelberg<\/p>\n<p>43 Besuchsbericht von der Alpha-1 Global 5th Research Conference &amp; 8th Patient Congress in Dublin<\/p>\n<p>44 Besuchsbericht : IPPC2023 in Lissabon<\/p>\n<p>46 Europ\u00e4ische Alpha-1-Patientenorganisationen auf dem Weg zur Alpha-1 Europe Alliance<\/p>\n<h3>LETTERS TO THE EDITOR:<\/h3>\n<p>49 Sport ist der Schl\u00fcssel \u2013 kleine Buchempfehlung<\/p>\n<p>50 Mein Weg zur Substitution \u2013 Drei Stimmen erz\u00e4hlen<\/p>\n<p>52 Meine Erfahrungen mit PROMISE<\/p>\n<h3>FROM RESEARCH:<\/h3>\n<p>53 Besuch des DGPs \u2013 Verleihung der Alpha1 Science Awards<\/p>\n<h3>FROM THE SELF-HELP GROUPS:<\/h3>\n<p>53 Patiententag in Stuttgart<\/p>\n<p>55 Ehrung langj\u00e4hriger Leiter &amp; Gedenkan an Ursula Kr\u00fctt-Bockem\u00fchl<\/p>\n<p>56 Ein Wort zu den Finanzen<\/p>\n<p>58 Impressum, F\u00f6rderer und Unterst\u00fctzer<\/p>\n<\/div>\n\n\n\n\n\t\t\t<\/div> \n\t\t<\/div>\n\t<\/div> \n<\/div><\/div>","protected":false},"excerpt":{"rendered":"Alpha1-Journal Ausgabe 1\/2023 Das Warten hatte ein Ende: Volles Haus und tolle Stimmung beim 20+2-Jubil\u00e4um in Bad Wildungen Lesen Sie in dieser Ausgabe: Die Highlights vom Infotag 2023 Ank\u00fcndigung: Alpha1...","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[24],"tags":[],"class_list":["post-6783","post","type-post","status-publish","format-standard","category-alpha1-journal"],"yoast_head":"<!-- This site is optimized with the Yoast SEO plugin v28.1 - https:\/\/yoast.com\/product\/yoast-seo-wordpress\/ -->\n<title>Ausgabe 1\/2023 - Ihr Online Portal f\u00fcr Mitglieder und 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