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
- 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.
- 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