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