Goals and tasks
The association's purpose is the non-material and financial support of research into and treatment of NBIA disorders, as well as providing advice and information about the condition to those affected. (Statute from Hoffnungsbaum e.V.)
Hoffnungsbaum e.V. is a non-profit organization whose primary purpose is to promote research. As lay experts, we are also often the first point of contact for those affected after diagnosis or with any disease-related questions. In this way, we perform typical self-help tasks. The following four key areas define our association's work:
Research funding
- Collecting and managing donations (see Financing, Appeals for donations)
- Tendering and awarding of funding (see Research funding)
- Participation in international research projects (e.g. TIRCON)
- Incorporating patient experience into clinical research projects
- Providing an interface between researchers and those affected
- Forwarding information about public tenders to researchers
- Supporting the International NBIA patient register
Networking
- Facilitating contact between researchers or research groups, doctors and affected people worldwide
- Organization of Family conferences
- Provision of a Family network
- Collaboration with other non-profit corporations, associations, organizations (see Partner)
- Support in establishing NBIA specialized centers (see Clinics and institutes)
Support for affected individuals
- First point of contact for affected individuals After the diagnosis And in the further course of the disease
- Emotional support, exchange and advice
- Provision of the Findings and advice folder
- Facilitating contact with doctors, clinics and therapy facilities experienced in NBIA
- Target group-oriented dissemination of disease-relevant information
- Grief management
Dissemination of information
- Providing quality-assured Information about NBIA
- Passing on News from research To affected doctors and researchers
- Writing and providing our own Publications
- Participation in scientific conferences (e.g. Autophagy Congress in NY)
- Lectures, information stands and discussion contributions at various Events
- Publication of a dedicated Newsletter
- Public relations work to raise awareness of NBIA
