{"id":5060,"date":"2022-03-06T14:40:52","date_gmt":"2022-03-06T13:40:52","guid":{"rendered":"https:\/\/aa-pnh.org\/bringing-together-aa-pnh-patients\/"},"modified":"2022-03-06T14:40:52","modified_gmt":"2022-03-06T13:40:52","slug":"bringing-together-aa-pnh-patients","status":"publish","type":"post","link":"https:\/\/aa-pnh.org\/en\/bringing-together-aa-pnh-patients\/","title":{"rendered":"Bringing together AA\/PNH patients"},"content":{"rendered":"<p><\/p><div id=\"attachment_4959\" style=\"width: 310px\" class=\"wp-caption alignnone\"><img loading=\"lazy\" decoding=\"async\" aria-describedby=\"caption-attachment-4959\" src=\"https:\/\/aa-pnh.org\/wp-content\/uploads\/\/vernetzung_989x660-300x200.jpg\" alt=\"\" class=\"size-medium wp-image-4959\" width=\"300\" height=\"200\" srcset=\"https:\/\/aa-pnh.org\/wp-content\/uploads\/vernetzung_989x660-300x200.jpg 300w, https:\/\/aa-pnh.org\/wp-content\/uploads\/vernetzung_989x660-500x334.jpg 500w, https:\/\/aa-pnh.org\/wp-content\/uploads\/vernetzung_989x660-768x513.jpg 768w, https:\/\/aa-pnh.org\/wp-content\/uploads\/vernetzung_989x660-700x467.jpg 700w, https:\/\/aa-pnh.org\/wp-content\/uploads\/vernetzung_989x660.jpg 989w\" sizes=\"auto, (max-width: 300px) 100vw, 300px\"\/><p id=\"caption-attachment-4959\" class=\"wp-caption-text\"><span class=\"caption\">Photo: Guido Grochowski_Adobe Stock<\/span><\/p><\/div><br>\n&nbsp;\n<p>Most people who suffer from a rare disease such as <a class=\"glossaryLink\" aria-describedby=\"tt\" data-cmtooltip=\"&lt;div class=glossaryItemTitle&gt;aplastic&lt;\/div&gt;&lt;div class=glossaryItemBody&gt;Condition of the non-functional bone marrow that cannot develop blood cells&lt;\/div&gt;\" href=\"https:\/\/aa-pnh.org\/en\/glossar\/aplastic\/\" data-gt-translate-attributes='[{\"attribute\":\"data-cmtooltip\", \"format\":\"html\"}]' tabindex=\"0\" role=\"link\">aplastic<\/a> anaemia (AA) or PNH are initially alone with this diagnosis: Since <strong>only a few thousand people in Germany suffer from AA and PNH<\/strong> , hardly anyone of their family and friends has ever heard of these diseases, let alone suffers from them themselves. This often makes it difficult for those affected to exchange questions, worries, tips and experiences.  <\/p>\n<p>At this point, we as an association, together with the lichterzellen <a href=\"https:\/\/lichterzellen.de\" rel=\"noopener\" target=\"_blank\">foundation<\/a> , would like to <strong>bring together locally as many AA and PNH patients and relatives as possible <\/strong> , so that they do not only meet on the internet, but maybe soon face to face with other affected people in their vicinity. We keep a list of patients and relatives in which you can register if you wish. Please fill out this <a href=\"https:\/\/aa-pnh.org\/download\/vernetzung-einwilligungserklaerung\/\" rel=\"noopener\" target=\"_blank\">form<\/a> and send it to us. <\/p>\n<p><!--more--><\/p>\n<p>All data that you provide will only be stored by us and the lichterzellen foundation. We only give the data out to registrants who inquire about other AA\/PNH patients or relatives living in their area. <\/p>\n<p>On the following <strong>map<\/strong> you can see where patients and their relatives have already entered the list and where our regional groups are based.<\/p>\n<p>Meaning of the <strong>colours<\/strong> :<br>\n<font color=\"#FF8000\"><strong>ORANGE<\/strong><\/font> : Patients with AA\/PNH<br>\n<font color=\"#0080FF\"><strong>BLUE<\/strong><\/font> : Parents of children with AA\/PNH<br>\n<font color=\"#008000\"><strong>GREEN<\/strong><\/font> : Regional group of Aplastische An&auml;mie &amp; PNH e.V.<br>\n<font color=\"#800080\"><strong>PURPLE<\/strong><\/font> : Relatives<\/p>\n<p><iframe loading=\"lazy\" src=\"https:\/\/www.google.com\/maps\/d\/embed?mid=1fbsqPjX1ov7wAnv1UyZHh51seXg&amp;ehbc=2E312F\" width=\"640\" height=\"480\"><\/iframe><\/p>\n","protected":false},"excerpt":{"rendered":"<p>&nbsp; Most people who suffer from a rare disease such as <a class=\"glossaryLink\" aria-describedby=\"tt\" data-cmtooltip=\"&lt;div class=glossaryItemTitle&gt;aplastic&lt;\/div&gt;&lt;div class=glossaryItemBody&gt;Condition of the non-functional bone marrow that cannot develop blood cells&lt;\/div&gt;\" href=\"https:\/\/aa-pnh.org\/en\/glossar\/aplastic\/\" data-gt-translate-attributes='[{\"attribute\":\"data-cmtooltip\", \"format\":\"html\"}]' tabindex=\"0\" role=\"link\">aplastic<\/a> anaemia (AA) or PNH are initially alone with this diagnosis: Since only a few thousand people in Germany suffer from AA and PNH , hardly anyone of their family and friends has ever&hellip;<\/p>\n","protected":false},"author":7,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"gallery","meta":{"footnotes":""},"categories":[104,112,105,93],"tags":[],"class_list":["post-5060","post","type-post","status-publish","format-gallery","hentry","category-aplastic-anemia-aa","category-offers","category-pnh-en","category-regional-groups","post_format-post-format-gallery"],"_links":{"self":[{"href":"https:\/\/aa-pnh.org\/en\/wp-json\/wp\/v2\/posts\/5060","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/aa-pnh.org\/en\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/aa-pnh.org\/en\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/aa-pnh.org\/en\/wp-json\/wp\/v2\/users\/7"}],"replies":[{"embeddable":true,"href":"https:\/\/aa-pnh.org\/en\/wp-json\/wp\/v2\/comments?post=5060"}],"version-history":[{"count":0,"href":"https:\/\/aa-pnh.org\/en\/wp-json\/wp\/v2\/posts\/5060\/revisions"}],"wp:attachment":[{"href":"https:\/\/aa-pnh.org\/en\/wp-json\/wp\/v2\/media?parent=5060"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/aa-pnh.org\/en\/wp-json\/wp\/v2\/categories?post=5060"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/aa-pnh.org\/en\/wp-json\/wp\/v2\/tags?post=5060"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}