Club structure

Due to a generational change, the board and other active members developed a new association structure in a strategy meeting in 2021. Active participation in the association's work is very welcome in the individual working groups (AGs). Please contact us if you can provide support in a specific area!

AG-Research Funding

• Networking with partners, researchers, patients, etc.
• Acquisition of new, effective research projects
• Commissioning, support, and monitoring of research projects
• Efficient use of available financial resources for research funding after internal board approval
• Organization and implementation of research-oriented events as part of the Hoffnungsbaum lecture series
• Transparent information to the board and members about ongoing and completed research projects (including translation activities, if applicable)
• Professional development regarding NBIA in general

AG-Patient Support

• Organization, creation, and maintenance of a decentralized solution for patient support
• Organization and implementation of the necessary communication channels in close coordination with the AG-Public Relations and AG-Administration
• Providing advice to those seeking help that is professionally adapted to the respective inquiry situation and emotionally stabilizing to the greatest extent possible
• Managing and processing inquiries
• Professional development regarding support for affected individuals, focusing on resources within the partner and umbrella organization network

Working Group Administration

• Applying for grants to continuously support the generally required association activities and to organize further events as needed
• Organizing, conducting, and documenting all activities necessary to maintain the association's operations (bookkeeping, taxes, banking, etc.)
• General administration of members and network partners
• Organizing, conducting, and documenting regular board meetings and the annual general meeting
• Organizing and conducting family conferences and other events, if necessary
• Maintaining, developing and optimally expanding the existing association connections to umbrella organizations and partner organizations
• Professional development regarding association administration and organization

Working Group - Information Processing

• Maintaining, developing and updating the website to the best of our ability
• Coordinating content, creating, and distributing newsletters to various interest groups
• Reviewing and implementing all data protection aspects within the association's work
• Creating, implementing, maintaining, and, if necessary, managing new, effective communication channels in the area of social media and messenger services
• Organizing and conducting/participating in events relevant to Hoffnungsbaum
• Creating and organizing banners, posters, flyers, etc.
• Applying for grants to further professionalize public relations
• Professional development regarding public relations in general

Working Group - Fundraising

• Maintaining, developing, and optimally expanding existing fundraising activities
• Reviewing and possibly introducing new, effective fundraising opportunities
• Applying for grants to further professionalize fundraising activities
• Internal administration of donations and donors
• Creating donation receipts
• Organizing, conducting, and participating in fundraising events relevant to Hoffnungsbaum.
• Professional development regarding fundraising opportunities.