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Association for the promotion of research and treatment of NBIA diseases
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Christmas 2022

A brief review of 2022

A turbulent year lies behind us, but the pandemic and the turning point have not changed the importance of our work. We continue to support those affected and their families, network researchers worldwide and were able to launch new research projects again last year. In doing so, we have expanded our collaboration with our most important international partners. We also continued to deal with the generational change in the Executive Board. The most important tasks have now been handed over or redistributed. At the regular Board elections in November, five of the previous seven Board members were confirmed in office. Further information at: Management Board

We would like to thank Anja Barthe and Sebastian Matthiesen for their commitment over the last few years! We can now use their support and would be delighted if you would also like to get actively involved!

The work of Hoffnungsbaum is only possible thanks to the personal commitment of the NBIA families and their families. Many thanks to all those who have started fundraising campaigns, donated themselves or supported the association in other ways!

The entire Hoffnungsbaum team wishes you a peaceful holiday season and
A good start to the new year!

Anniversary: 20 years Hoffnungsbaum e.V.

Hoffnungsbaum e.V. was founded on November 24, 2002 by three NBIA families and a few friends and relatives. We actually wanted to celebrate the 20th anniversary at a family conference. Unfortunately, that didn't happen. However, we still want to celebrate the anniversary next year - how exactly is not yet clear. But it's not too late, because Hoffnungsbaum e.V. officially began its work in 2003 when it was entered in the register of associations. Read the Founding history.

Two MPAN project grants totaling $140,000 awarded

Two MPAN project grants totaling $140,000 awarded
Hoffnungsbaum e.V. in conjunction with three sister organizations in Europe and the US, has awarded two MPAN grants to advance research priorities in the field of mitochondrial membrane protein-associated neurodegeneration (MPAN), which were identified during an expert workshop on MPAN. MPAN is one of the four most common subtypes of the disease group whose generic term is "neurodegeneration with iron storage in the brain". Dr. Lena F. Burbulla from ...


Mulled wine stand for the benefit of Hoffnungsbaum and Team Bananenflanke

Mulled wine stand for the benefit of Hoffnungsbaum and Team Bananenflanke
The Sandkastenfreunde, Melanie Schratzenstaller, Michael Bogner, Stephan Thalhammer, Stefan Huber, Ramona Klement and Lisa Kaltenecker, from Eberspoint (south of Landshut) organized a mulled wine stand for charity again on the first weekend of December after a two-year break. "Die Sandkastenfreunde "Melanie Aigner is the speech therapist for my son Laurin, who has BPAN. So I am very pleased that the six friends in this ...


New: Online donations now possible!

For a few weeks now, it has also been possible to donate directly via our website using SEPA direct debit or PayPal. This simplifies donations enormously and also largely automates the administration of donations for us. Even though donations can still be made by bank transfer, please make use of the new options, as this reduces the administrative workload for us. Donate now!
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New Hoffnungsbaum flyer available

Info flyer
The information flyer, which was created from scratch, can be downloaded via can be ordered free of charge. You are welcome to view the flyer online in advance:
Download info flyer

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In addition to this general list, we have set up further special lists for individual NBIA variants and a special list for researchers/clinicians. Under the following link you can now subscribe or unsubscribe to these e-mail lists as you wish:
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Association for the promotion of research and treatment of NBIA diseases
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