Association structure

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

AG-Betroffenenberatung

• 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

AG Administration

• 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.

AG Fundraising

• 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