Club structure

The Executive Board and other active members developed a new association structure in a strategy meeting in 2021 due to a generational change. You are very welcome to support the active work of the association in the individual working groups (WGs). Please contact us if you can support us in a specific area!

AG research funding

  • Networking with partners, researchers, patients, etc.
  • Acquisition of new target-oriented research projects
  • Commissioning, monitoring, support and supervision of research projects
  • Efficient use of available financial resources to promote research following internal coordination within the Management Board
  • Organization and implementation of research-oriented events as part of the Hoffnungsbaum lecture series
  • Transparent information for the Board of Directors and members about ongoing and completed research projects (including translation activities where applicable)
  • Specialist training relating to NBIA in general

AG counseling for affected persons

  • Organization, creation and maintenance of a decentralized solution for advising those affected
  • Organization and implementation of the necessary communication channels in close coordination with the WG Public Relations and WG Administration
  • Advice that is professionally adapted to the respective inquiry situation and provides the best possible emotional stabilization for the enquirer
  • Management and further processing of the respective requests
  • Specialist training in counseling affected persons with a focus on services in the partner and umbrella association network

AG administration

  • Applying for funding to continue the association's general activities and to organize further events as required
  • Organization, implementation and recording of all activities necessary for the maintenance of the association's work (accounting, tax, banking, etc.)
  • General administration of members and network partners
  • Organization, implementation and recording of regular board meetings and the annual general meeting
  • Organization and implementation of family conferences and other events as required
  • Maintenance, continuation and best possible expansion of existing association relationships with umbrella organizations and partner organizations
  • Professional training in association administration and organization

AG-Information processing

  • Maintenance, continuation and best possible updating of the website
  • Content coordination, creation and distribution of newsletters to the various interest groups
  • Examination and implementation of all data protection aspects in the context of the association's work
  • Creation, implementation, maintenance and, if necessary, needs-based management of new, target-oriented communication channels in the area of social media and messenger services
  • Organization and implementation/participation in events relevant to Hoffnungsbaum
  • Creation and organization of banners, posters, flyers, etc.
  • Application for funding to further professionalize public relations work
  • Professional training in public relations work in general.


  • Maintenance, continuation and best possible expansion of existing fundraising activities
  • Examination and possible introduction of new targeted fundraising opportunities
  • Applying for funding to further professionalize fundraising activities
  • Internal administration of donations and donors
  • Creation of donation receipts
  • Organization and implementation/participation in fundraising events relevant to Hoffnungsbaum
  • Specialist training regarding FR opportunities

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