Report on the group leaders' meeting, October 26-28, 2018, Darmstadt
Author
Marion Wilkens, as published in Alpha1 Journal 2/2018
We began our meeting on Friday, October 26th at 5 pm in the lobby of the Welcome Hotel Darmstadt. Over a pleasant dinner in the historic Bockshaut restaurant, we introduced ourselves and
The new group leaders were especially welcomed. Initial thoughts on group work and new ideas were discussed, but problems were also highlighted (e.g., recruiting new members). Before dinner, Dr. Uta Butt (Respiratory League – Alpha1 Centers Coordinator) presented a new project idea and requested collaboration. Several of our group leaders immediately volunteered.,
to support the APP qualification project.
The focus of the meal was lively discussion; many exchanged ideas, planned joint projects, and simply got to know each other better. On Saturday, we began at 9 a.m. with a welcome and an introduction to the topics. Many good examples from the various groups were presented as inspiration. Many thanks to all the group leaders who organized such fantastic events last year. After a very encouraging report from Bernd Dobbert about his hike on the Camino de Santiago in Spain and Herbert Rude's account of his climb up Kilimanjaro, we all traveled, at least mentally, to Austria. Chairwoman Ella Geiblinger took us on this journey, sharing what's new in Austria and where we share common goals. Our group leader from Munich, Alexander Niepel, and his wife attended this year's group leaders' meeting in Austria as part of the German delegation and shared the ideas they brought back with them.
Marion Wilkens provided information about the association, including updates, attended meetings, and what she brought back for the groups. In a growing association, involving group leaders is becoming increasingly important. Regional meetings and contacts with the centers in the area should, for example, be handled by the group leaders.
Our treasurer, Ronald Lüdemann, explained why next year will be a special year for us, where we as group leaders can find additional sources of funding, and what we can expect in the coming year.
Expected next year. Thomas Heimann (at that time an advisor at Alpha1 Germany) reported on member data management and the new GDPR. Data protection has long been a focus, but the new regulation required us to reconsider several aspects.
As every year, there were many specific things to discuss again this year. Where do I get funding, how do I find speakers, what are the rules regarding...
What are pharmaceutical companies allowed to do, and what are they not? What are the guidelines for self-help groups?
Andrea Kleinert visited the Bundestag for us and gave a brief report. Udo Held surprised us with a group sing-along, which was very uplifting – even if not everyone sang at the top of their lungs, the laughter and humming along contributed to the team's well-being. After a short lunch break, Ms. Fehringer and Ms. Böhmer (Grifols) presented the new concept for the AlphaCare Regional Days. The group leaders thought the idea was excellent, and almost everyone wants to support this project next year and use it for their own group.
Michaela Frisch (advisory board member) then spoke about pulmonary exercise. The discussion focused on the journal survey 1/2018 and the potential implications of our members' responses. We also addressed the topic of integrating our self-help groups, where to find pulmonary exercise groups, etc. Finally, we presented the new oxygen flyer and brainstormed ideas in small groups on how to develop a flyer or similar material specifically for the groups.
The evening dinner buffet once again demonstrated the importance of networking among group leaders and exchanging experiences for effective group work. It was a very active and interesting group leader weekend; we had a fantastic time!
Marion Wilkens
