{"id":6565,"date":"2024-09-24T10:46:47","date_gmt":"2024-09-24T08:46:47","guid":{"rendered":"https:\/\/alpha1-deutschland.org\/?p=6565"},"modified":"2025-04-28T14:43:19","modified_gmt":"2025-04-28T12:43:19","slug":"eindruecke-vom-gruppenleitertreffen","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/eindruecke-vom-gruppenleitertreffen","title":{"rendered":"Impressions from the group leader meeting of Hans Frankl, Alpha1 Austria e. V."},"content":{"rendered":"
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Author<\/h4><\/span><\/span>\n<\/div>\n
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Hans Frankl, SHG Styria, Austria, as published in Alpha1 Journal 2\/2024<\/a>.<\/strong><\/p>\n<\/div>\n\n\n\n

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In my role as group leader of Alpha1 Austria, I have repeatedly had the opportunity to participate in the German group leader meeting in Hanover.<\/p>\n

Across countries, there is no difference in how rare diseases like AATM are handled. The self-help group "Alpha 1" primarily focuses on informing and supporting affected patients and their families in their daily lives. We also see it as our mission to raise awareness of this genetic defect among doctors. This is crucial for securing access to the necessary, costly, and life-sustaining medication.<\/p>\n

Nevertheless, we continue to receive feedback from our members that while Alpha-1 Antitrypsin deficiency is known, necessary examinations based on possible symptoms are not yet being carried out in a standardized manner.<\/p>\n

This excerpt of topics, and several more, were discussed and addressed in working groups at the meeting in Hanover on Friday.<\/p>\n

On Saturday, the patient day organized by Marion Wilkens of Alpha1 Germany and Prof. Dr. Sabina Janciauskiene, scientific director of the event, took place at Hannover Medical School (MHH). Exciting new information from the world of Alpha1 was presented.<\/p>\n

I was deeply impressed by Marion Wilkens' insightful article "Living with the Illness," in which she described her daily routine as someone affected by the illness. Thank you so much for that.<\/p>\n

The other speakers covered a range of topics:<\/span><\/h2>\n