Results of the Hoffnungsbaum survey 2020

from | November 8, 2020

In the period August - September 2020 Hoffnungsbaum e.V. conducted a broad-based opinion survey among all association members and NBIA families in Germany, Austria and Switzerland with whom we are in contact. The aim of the survey was to explore important and current issues to ensure the future viability of the association as well as the efficient and goal-oriented direction of the association's future work based on the needs of members and NBIA sufferers.
With a statistically very pleasing result of 30% participation rate and 74% completion rate (participants who answered the survey to the end), the survey achieved a good response among the participants and was therefore able to collect valuable feedback on all the categories surveyed. Of the responses received, 68% were from within the association (members) and 32% were external opinions. The most important survey results are summarized briefly below. They were also discussed at an extended Board meeting on 22.10.2020 and helped the Board to derive and decide on appropriate action strategies for the future:

  • Establishment and continuation of digital dissemination of current news (newsletter & news entries on the website) at needs-based intervals, including partial translation into English
  • Needs-based digital distribution and forwarding of information from partner organizations and umbrella associations of Hoffnungsbaum e.V.
  • Retention of the findings and consultation folders in paper form and as a digital file package for all families affected by NBIA
  • Further expansion and continuous updating of the website (, which was completely redesigned in 2019, as a central information platform
  • Increase active exchange and general activities in the family network
  • Development of a central strategy for all active HoBa members and supporters for the broadband implementation of simple ways to carry out fundraising campaigns
  • Examination of the implementation of NBIA variant-specific and other topic-related WhatsApp groups and Instagram accounts
  • Recruitment of additional voluntary association members to ensure the future viability of the association through a broader distribution of the diverse tasks in the context of the current generational change

We hope to be able to address these issues as quickly as possible and use this valuable feedback to steer the association optimally into the future.
Once again, MANY THANKS to all survey participants for your support and your contribution to the hopefully continued successful future of Hoffnungsbaum e.V.

Thank you very much for your support.
The Executive Board of Hoffnungsbaum e.V.


PS: If you have any good ideas and/or motivation to work on the above-mentioned topics or on the association's work in general, we would be delighted to hear from you. Hoffnungsbaum e.V. we would be very pleased to hear from you: or via the Contact form

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