Author
Sabine Habicht, Editor-in-Chief, Patient Library – Respiratory Tract and Lungs, as published in Alpha1 Journal 1/2023.
“…to be able to welcome such a high number of 340 participants for a rare disease such as Alpha-1 Antitrypsin Deficiency,” said Professor Dr. Claus Vogelmeier on the occasion of the information day in Bad Wildungen.
That's how I felt too, and I'd like to mention something else, something that was very noticeable and ran through both days of the event – both during the members' meeting and during the information day: a palpably lived positive community and an extremely respectful coexistence.
Yes, of course, one might think, finally the first in-person meeting after the pandemic. Everyone is automatically in a good mood and happy to get together in a larger setting with numerous encounters. That may well have been one of the reasons why so many participants could be welcomed in person, certainly.
I don't think the reason for this special culture of collaboration was the pandemic. Rather, a strong impetus comes from the consistency and the almost affectionate – if I may put it that way – commitment of the entire management team, and one can truly speak of a real team at Alpha1.
Marion Wilkens, as Chairwoman, is always present, whether it's advocating for Alpha1 in scientific committees, handling local organizational matters, or charmingly opening the dance during the gala evening with PD Dr. Greulich. Gabi Niethammer, as Vice Chairwoman, shaped Alpha1 for 18 years and continues her work, particularly for children and young people, as an advisor.
And the special spirit continues with the new 2nd Chairman, Dr.-Ing. Heinz Stutzenberger, who is working intensively and successfully for the networking and establishment of a European Alpha1 patient organization and explained the concrete steps towards the umbrella organization during his presentation.
The board is completed by Thomas Heimann, who always has a joke ready, and Peter Hübner as the prudent treasurer. The advisory board members and group leaders also leave their own personal mark on the interactions within Alpha1.
The sense of community and shared experience was evident in all the speakers. An illness necessitated a last-minute replacement within just one day. A real challenge, but not impossible for Alpha1 – thanks to their strong personal connections. Dr. Inga Jarosch and Dr. Tessa Schneeberger from the Schön Clinic Schönau in the Berchtesgaden region stepped in at short notice and delivered a fascinating presentation. They had originally been invited as guests – what remarkable flexibility!.
The messages conveyed through open encounters and successful cooperation were summed up by Dr. Alexander Rupp (active in the scientific advisory board at Alpha1) and Dr. Heinz Steveling (a veteran of the Alpha1 experts): One no longer feels alone with the illness, can actively do something about it, and can achieve much more in many respects through solidarity.
So now it's clear why it's important to report on this interaction…
Because we need so much more of this dedication, this joy, and this genuine sense of community. Let yourself be infected by this special "Alpha1 virus" with its exclusively positive effects.
I am sure that the 1,000 member mark will be reached very soon.
Alpha1 information day in Bad Wildungen: Captivating impressions and exciting sound bites in our image film!
As you read in the journal at the beginning, the Alpha1 information day in Bad Wildungen attracted around 340 enthusiastic participants. This special event, which took place as part of our 20+2 anniversary celebrations, was accompanied by renowned experts and provided a fitting setting for an unforgettable weekend.
The information day also held a special highlight: a specially produced promotional video that captures the atmosphere and the highlights of the event. With stunning footage and engaging sound bites, the film provides a vivid picture of the event. Since not everyone could attend in person, we released the video on our official YouTube channel to give everyone the opportunity to experience the Alpha1 information day.
It demonstrates the enthusiasm of the participants and the importance of the Alpha1 Information Day to experts. We are grateful and proud that the Alpha1 Information Day was such a success and thank all participants, speakers, organizers, and the two sponsors, CSL Behring and Grifols, who contributed to this special event.
Visit our official YouTube channel and experience the highlights of the Alpha1 Information Day for yourself. Immerse yourself in the world of Alpha-1 antitrypsin deficiency and be inspired by the progress and the community.
Impressions of the anniversary event
