Hoffnungsbaum e.V. is a German NBIA patient organization, launched as a non-profit in 2002. Currently, there are almost 30 NBIA-families from Germany and other European countries united in the patient organization, which is connected to numerous further German and European NBIA and Neuroacanthocytosis (NA) families.
Hoffnungsbaum’s mission is to improve diagnostics and treatment options, improve medical and psychosocial care for patients and overall, aims at enhancing all research efforts in all NBIA Disorders
- Emotional support: The association provides emotional support and advice to NBIA-families. Since 2012 a recently developed NBIA Health Care notebook is available as a new family support service.
- Networking: Particularly the bi-yearly NBIA family conferences in Germany, organized by Hoffnungsbaum e.V., are an excellent communication platform by providing the opportunity to exchange experiences and knowledge between families, clinicians and scientists. They enable participants to network and to start new cooperations and projects.
- Research support: Hoffnungsbaum e.V. focuses on research support as research is a precondition for effective therapies and for an alleviation of patients’ suffering in future. Fostering research includes project funding as well as intense national and international networking activities and collaboration with key stakeholders in the field of NBIA.
- Cooperation: Hoffnungsbaum e.V. cooperates with with TIRCON-partner NBIA Disorders Association (USA) and the other European NBIA patient advocacies under the umbrella of the international NBIA ALLIANCE, which was launched at the TIRCON kick-off-meeting in January 2012. HoBa also cooperates with the NAadvocacy and as external partner with the E-RARE-project on NA (EMINA), as PKAN shows overlapping features with NA.
- Dissemination: Hoffnungsbaum e.V. aims at providing good quality information on all NBIA-related topics. The patient organization publishes own media like the website www.hoffnungsbaum.de, newsletter, leaflets besides further public relations activities, targeting at all relevant stakeholders in the field of NBIA and rare diseases. As TIRCON partner Hoffnungsbaum e.V. is in charge for dissemination, based on a long-lasting dissemination experience.
- Lobbying: In the framework of the Rare Diseases Patients’ Movement Hoffnungsbaum e.V. lobbies in favor of a Rare-Diseases-friendly policy and infrastructure in German and European Public Health Policy, emphasizing particularly the set-up of a clinical NBIA-network, comprised by renown centers of expertise. Hoffnungsbaum e.V. here cooperates with its’ Rare Diseases umbrella organizations ACHSE e.V. and Kindernetzwerk e.V. at national level and EURORDIS at the European level.
Angelika Klucken, founder and chair of Hoffnungsbaum e.V., has a 23-year-old son with PKAN. Shortly after the diagnosis of her son in 2001 and inspired by the work of the NBIA Disorders Association, Klucken initiated the NBIA lay advocacy Hoffnungsbaum e.V. in Germany in 2002 to overcome the isolation of affected families and to foster research. Moreover one of her first aims was to compensate for the lack of current information about NBIA for patients and medical staff in Germany. Klucken was member of the ACHSE board of directors from 2004-2008, mainly in charge of research support for Rare Disorders within ACHSE activities. As chair of Hoffnungsbaum e.V. her responsibility includes all networking, dissemination and research related activities of the association. Since its launch in 2002 Hoffnungsbaum e.V. was in close contact to TIRCON partner TUM and moreover has maintained good relationships to other TIRCON-partners for years, including LMU, OHSU, UMCG and NBIA DA. Klucken volunteers on behalf of Hoffnungsbaum and TIRCON.
Main Tasks in the Consortium
Like NBIA DA, HoBa represents the patients’ interests within the Consortium.
Main tasks include:
- Leader of WP 7 (Dissemination) and TIRCON’s dissemination manager
- Non-beneficiary partner in WP1, WP 4, WP6