Author
Hans Frankl, SHG Styria, Austria, as published in Alpha1 Journal 2/2024.
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.
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.
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.
This excerpt of topics, and several more, were discussed and addressed in working groups at the meeting in Hanover on Friday.
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.
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.
The other speakers covered a range of topics:
- Bronchiectasis in AATM (Dr. Isabell Pink)
- Infections and vaccination at AATM (Dr. Christopher Alexander Hinze)
- Lung transplantation at AATM (Dr. Mark Greer)
- Substitution „Yes or No“ with case studies (Prof. Dr. Sabina Janciauskiene)
- AATM from the hepatologist's perspective – new treatment options (Dr. Katja Deterding)
- Following the presentations, there was a very productive question and answer session with the speakers.
The social aspect during the break and afterwards allowed me to talk to like-minded people and exchange ideas constructively.
I would like to take this opportunity to thank the group leaders and the board of Alpha1 Germany once again for the invitation and the excellent cooperation, true to the motto: Never start to stop – never start to stop. Stay healthy and take care of yourselves.
Looking forward to seeing you again. Kind regards, Hans Frankl
Alpha1 Austria – Support for those affected in Austria
On www.alpha1-oesterreich.at Those affected and their families in Austria can find helpful information, support, and opportunities to connect. Visit our site and stay informed!
