Club structure

Due to a generational change, the board and other active members worked out a new association structure in a strategy meeting in 2021. The active work of the association can be supported in the individual working groups (AGs). Please get in touch with us if you can help in a specific area!

Research Funding Group

  • Networking with partners, researchers, patients, etc.
  • Acquisition of new, goal-oriented research projects
  • Commissioning, supervising, supporting and supervising research projects
  • Efficient use of available financial resources for research funding after internal Board approval
  • Organization and implementation of research-oriented events within the framework of the Hoffnungsbaum-Course of lectures
  • Transparent information for the Board of Directors and members about ongoing and completed research projects (including translation activities, if applicable)
  • Professional development regarding NBIA in general

WG Counselling for Affected Persons

  • Organising, creating and maintaining a decentralised solution for counselling those affected
  • Organization and implementation of the necessary communication channels in close coordination with the AG Public Relations and AG Administration
  • Professionally adapted to the respective enquiry situation and emotionally stabilising the enquirer in the best possible way
  • Management and further processing of the respective requests
  • Professional training in counselling for those affected with a focus on offers in the partner and umbrella organisation network

WG Administration

  • Application for funding for the continuous continuation of the generally required association activities as well as for the needs-based organization of further events
  • Organization, implementation and logging of all activities necessary for the maintenance of the association's work (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
  • Organization and implementation of family conferences and, if necessary, other events
  • Maintenance, continuation and best possible expansion of the already existing association connections to umbrella organisations and partner organisations
  • Professional training in association administration and organization

WG Information Processing

  • Maintaining, updating and updating the website in the best possible way
  • 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, targeted communication channels in the field of social media and messenger services
  • Organization and implementation/participation in Hoffnungsbaum relevant events
  • Creation and organization of banners, posters, flyers, etc.
  • Applying for funding to further professionalize public relations work
  • Professional training in public relations in general

AG Fundraising

  • Maintenance, continuation and best possible expansion of existing fundraising activities
  • Examination and possible introduction of new, goal-oriented fundraising opportunities
  • Application for funding to further professionalize fundraising activities
  • Internal management of donations and donors
  • Preparation of donation receipts
  • Organization and implementation/participation in Hoffnungsbaum relevant fundraising events
  • Professional development with regard to FR opportunities

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