Goals and Tasks
"The purpose of the association is the non-material and financial promotion of research into and treatment of NBIA diseases as well as the provision of advice and information on the disease to those affected." (Articles of Association from Hoffnungsbaum e.V.)
Hoffnungsbaum e.V. is a non-profit association whose primary purpose is to promote research. However, as lay experts, we are also often the first point of contact for those affected after diagnosis or for questions of any kind relating to the disease. In this way, we perform typical self-help tasks. Our association's work focuses on the following four areas:
Research funding
- Collecting and managing donations (see Funding, Fundraising)
- Tendering and awarding of subsidies (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 on public tenders to researchers
- Support for the International NBIA patient register
Networking
- Establishing contacts between researchers and research groups, doctors and patients worldwide
- Event from Family conferences
- Provision of a Family network
- Cooperation with other non-profit corporations, associations and organizations (see Partners)
- Support for the establishment of NBIA centers of expertise (see Clinics and institutes)
Advice for those affected
- Contact point for those affected after the diagnosis and in the further course of the disease
- Emotional support, exchange and advice
- Providing the Findings and advice folder
- Contact mediation to NBIA-experienced doctors, clinics and therapy facilities
- Target group-oriented dissemination of disease-related information
- Coping with grief
Dissemination of information
- Provision of quality-assured Information about NBIA
- Passing on of News from research to affected physicians and researchers
- Writing and providing your own Publications
- Participation in scientific conferences (e.g. Autophagy Congress in NY)
- Presentations, information stands and contributions to discussions at various events. events
- Publication of your own Newsletters
- Public relations work to draw attention to NBIA
