Partner Profile

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

 Main activities


  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:



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