Association structure

The board of directors and other active members have worked out a new association structure in a strategy meeting in 2021 due to a generation change. The active association work can be supported very gladly in the individual working groups (AGs). Please contact us if you can support in a certain area! The individual working groups are described below.

WG Research Funding

  • Network 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 for research funding following internal coordination within the Executive Board
  • Organization and implementation of research-oriented events within the framework of the Hoffnungsbaum lecture series
  • Transparent information of the board and members about ongoing and completed research projects (including translation activities, if applicable)
  • Professional training concerning NBIA in general


  • Organization, creation and maintenance of a decentralized solution for affected person consultation
  • Organization and implementation of the required communication channels in close coordination with the AG Public Relations and AG Administration.
  • Professional counseling of the inquirer, adapted to the respective situation and emotionally stabilizing in the best possible way
  • Management and further processing of the respective requests
  • Professional further education regarding counseling of affected persons with focus on offers in the partner and umbrella organization network

AG Administration

  • Application for funding for the continuous continuation of the generally necessary activities of the association as well as for the organization of further events in line with demand.
  • Organize, conduct and record all activities necessary for the maintenance of the association's operations (accounting, tax, banking, etc.).
  • General management of members and network partners
  • Organizing, conducting and taking minutes of regular board meetings and the annual general meeting of members
  • Organization and implementation of family conferences as well as other events, if necessary
  • Maintenance, continuation and best possible expansion of already existing association connections to umbrella associations and partner organizations
  • Professional training in association management and organization

WG Information Processing

  • Maintenance, continuation and best possible updating of the website
  • Coordination of content, creation and distribution of newsletters to the various interest groups
  • Review and implementation of all data protection aspects in the context of the association's work
  • Creation, implementation, maintenance and, if necessary, demand-driven 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
  • Further training in public relations in general.

AG Fundraising

  • Maintenance, continuation and best possible expansion of already existing fundraising activities
  • Examination and possible introduction of new target-oriented fundraising possibilities
  • Applying for funding to further professionalize fundraising activities
  • Internal management of donations and donors
  • Preparation of donation receipts
  • Organize and conduct/participate in fundraising events relevant to Hoffnungsbaum
  • Professional development regarding FR opportunities


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