Author
Roland Bühner, as appeared in Alpha1 Journal 2/2023.
The group leader conference held from October 13th to 15th, 2023 in Darmstadt was themed „A dynamic process“
It was a successful working meeting held in a very nice conference hotel with ideal meeting rooms and the presence of almost all group leaders and their deputies. Partners were also welcome, as they bring a different perspective to the discussion. The well-structured agenda, with its sensible timing, included sufficient breaks for respite. The internal workshop was complemented by an excellent presentation on "Insurance for Volunteers" by Dr. Stiehr, which was also perfectly timed (after a very intensive work session on Friday evening and Saturday morning).
The three-day format (Friday afternoon/evening, all day Saturday, and Sunday morning) worked very well, as it allowed us to start working on Friday evening, thus ensuring optimal use of the available time. The revised format (compared to previous management meetings) was a complete success. The novelty: the board and the management team worked separately on Friday evening and Saturday morning. One group held a board meeting, while the other brainstormed and developed projects. Within a short time, four working groups were formed, each focusing on a different topic. These groups were selected from a pool of nine ideas that had been jointly developed and distributed beforehand.
- Alpha-1 antitrypsin deficiency and public perception/presentation/acceptance
- Alpha-1 antitrypsin deficiency and substitution/augmentation therapy
- Alpha-1 antitrypsin deficiency and rehabilitation
- Alpha-1 antitrypsin deficiency and severe disability
An incredibly constructive and highly focused working environment developed within the individual groups (mostly four people). On Saturday, the results and ideas of the four groups were presented to the entire team, consisting of the board and group leaders. This approach, or rather this format, proved very effective and should be continued in the future. The shared dinners on Friday and Saturday, as well as the relaxed get-togethers, also fostered team spirit and a sense of community.
Important NOTE: The board members and the group leaders or deputy group leaders all do their "jobs" on a voluntary basis and have limited time (some are still fully engaged in their professional lives and other volunteer activities). Therefore, such a weekend can initially only spark ideas and get things started. It's a dynamic process that began this weekend, and we now need to fill it with action and action.
Voices and mood of our group leaders
Impressions from the working groups
The 4 working groups and topics
1. The group proposed closer cooperation with umbrella organizations such as Achse or Namse to establish direct connections with politicians, launch a marketing campaign, and improve public perception. Their goal was to attract new patients and establish a dynamic process for care and support.
2. The group addressed the "Substitution" project, covering everything from finding a suitable doctor to legal issues and port use while on vacation. One outcome was the idea for a flyer to provide guidance for patients who want to start substitution therapy.
3. The rehabilitation group suggests documenting the path to rehabilitation on the homepage and providing helpful links to facilitate the application process.
4. This group addressed the topic of "degree of disability", also to determine that this is not an easy topic to understand and that one should definitely seek support in this matter.
Further insights from the group leader meeting
The group leader meeting was characterized by intensive work in various workshops, where participants worked constructively in small groups. Despite the focus on tasks, there was still plenty of fun to be had, and the event was made possible by a fantastic and dedicated group.
