Goals and Tasks
"The purpose of the association is to promote ideally and financially the research and treatment of NBIA diseases as well as the counselling of affected persons and the provision of information on the disease." (Statutes from Hoffnungsbaum e.V.)
Hoffnungsbaum e.V. is a non-profit association whose primary purpose is to promote research. As lay experts, however, we are also often the first point of contact for those affected after diagnosis or for any kind of questions relevant to the disease. Thus we perform typical tasks of self-help. The following four focal points determine our association's work:
Research funding
- Collecting and managing donations (see Funding, Fundraising)
- Tendering and awarding of grants (see Research funding)
- Participation in international research projects (e.g. TIRCON)
- Incorporating patient experience into clinical research projects.
- Provide an interface between researchers and stakeholders
- Forwarding information about public tenders to researchers
- Support of the International NBIA patient register
Networking
- Mediation of contacts between researchers or research groups, physicians and affected persons worldwide
- Event from Family conferences
- Provide a Family Network
- Cooperation with other non-profit corporations, associations, organizations (see Partners)
- Support in the establishment of NBIA centers of expertise (cf. Clinics and institutes)
Affected person consultation
- Contact point for those affected After diagnosis and in the further course of the disease
- emotional support, exchange and advice
- Provide the Findings and advice folder
- Contact mediation to NBIA-experienced physicians, clinics and therapy facilities
- Target group-oriented dissemination of disease-relevant information
- Grief Recovery
Information dissemination
- Provide quality assured NBIA information
- Passing on News from the research to affected physicians and researchers
- Write and deploy your own Publications
- Participation in scientific conferences (e.g. Autophagy Congress in NY)
- Presentations, information booths and discussion contributions at div. Events
- Publication of your own Newsletters
- Public relations to raise awareness of NBIA.
