{"id":6525,"date":"2024-06-07T17:10:53","date_gmt":"2024-06-07T15:10:53","guid":{"rendered":"https:\/\/alpha1-deutschland.org\/?p=6525"},"modified":"2025-04-23T17:16:06","modified_gmt":"2025-04-23T15:16:06","slug":"besuch-tagesspiegel-in-berlin","status":"publish","type":"post","link":"https:\/\/alpha1-deutschland.org\/en\/besuch-tagesspiegel-in-berlin","title":{"rendered":"Visit of the expert panel on the topic of innovations for people with rare diseases at the Tagesspiegel in Berlin"},"content":{"rendered":"
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Peter H\u00fcbner, as appeared in Alpha1 Journal 1\/2024<\/a>.<\/strong><\/p>\n<\/div>\n\n\n\n

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On June 5th, an expert panel on the topic of innovations for people with rare diseases took place at the Tagesspiegel in Berlin, to which I had registered as a representative of our patient organization.<\/p>\n

Even though the focus was on a rare kidney disease, I was able to draw many parallels to alpha-1 antitrypsin deficiency. It's important that the topic of rare diseases continues to attract public interest. Equally important and interesting is the exchange of ideas after such an event, even if there are no concrete results, because one goal is always achieved: our disease becomes more widely known.<\/p>\n

An interesting presentation was the calculation of the socioeconomic burden of disease. This factor indicates how much time is lost to those affected \u2013 and also to society \u2013 due to treatment times, etc. The infusion and the associated costs immediately came to mind. The socioeconomic burden of disease is an important factor for policymakers and society to pay greater attention to rare diseases, as approximately 4.5 million people in Germany alone are affected by rare diseases.<\/p>\n

In my opinion, the topic of self-help groups and patient support, alongside medical care, was somewhat neglected after the often lengthy diagnostic process. I wasn't even able to ask the two members of parliament present my questions on this subject during the Q&A session. However, I will follow up with a written inquiry. MP E. Irlstorfer is currently writing a white paper on rare diseases, which is yet another reason to contact him. A recording of this expert panel discussion can be accessed here.<\/a><\/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":"Author Peter H\u00fcbner, as published in Alpha1-Journal 1\/2024. On June 5th, an expert panel on the topic of innovations for people with rare diseases took place at the Tagesspiegel in Berlin, which I attended...","protected":false},"author":1,"featured_media":6526,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1,24,74],"tags":[],"class_list":["post-6525","post","type-post","status-publish","format-standard","has-post-thumbnail","category-allgemein","category-alpha1-journal","category-veranstaltungsberichte"],"yoast_head":"\nExpertenrunde seltene Erkrankungen \u2013 Berlin 2024<\/title>\n<meta name=\"description\" content=\"Peter H\u00fcbner berichtet vom Austausch zur Versorgung seltener Erkrankungen beim Tagesspiegel \u2013 mit Fokus auf Alpha-1.\" \/>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" 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