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.

AG-Fundraising

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