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