As in previous years, we presented a survey at this year's general meeting. The aim was to find out which information and support services you use, what you particularly value – and where there is potential for improvements or new priorities.
Below we give you an insight into the wishes, needs and opinions of our members at Alpha1 Germany eV.
The top 3 findings:
- High regard for established information channels
Our classic offers continue to be very popular:
- 86 % regularly use the club website
- 78 % read the Alpha1 Journal
- 74 % subscribe to our newsletter
These channels are not only among the best-known, but also among the most popular sources of information.
- Great interest in research, therapy and exchange
The main focus is on the following topics:
- Medications and treatment options (94 %)
- Research and new therapeutic approaches (78 %)
- The exchange with other affected individuals (55.6 %)
This demonstrates how important professional information and personal networking are for our members.
- Desire for digital and flexible formats
Many members – especially working professionals – would like more digital offerings such as webinars, online self-help groups, or content that can be accessed at any time.
Even a virtual information day is met with openness:
58 % can well imagine a digital alternative – in addition to or as a replacement for face-to-face events.
What particularly pleased us
Our commitment was explicitly praised in numerous open-ended responses. Many members expressed gratitude and appreciation for the content, the organization, and the people behind Alpha1 Germany.
Constructive suggestions and impulses
Naturally, there were also suggestions for further development, including:
- Improving accessibility and expanding digital formats
- More specific offers for certain target groups (e.g., older, working, or mentally stressed members)
- Approval of the model of voluntary co-payments, for example at patient days
- The desire for more support for members who can no longer actively participate due to age or illness.
Thank you for your participation and your valuable feedback!
Only through your feedback can we further develop our offerings and shape the future together.
Here are the detailed results for download:
