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Association for the promotion of research and treatment of NBIA diseases
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There is news about NBIA!

You can access all contributions at any time at News on our website.

Hoffnungsbaum wishes you a peaceful time!

This newsletter is - even though it will not appear on paper this year - a little more detailed. It contains important news about the association's work and research!
Christmas card2021
With your support we promote NBIA research
give hope to all NBIA families!
Donation account: DE67 3305 0000 0000 305979 |

Save the Date: NBIA Family Conference 2022 in Germany!

8th NBIA Family Conference
Hoffnungsbaum e.V. will be organizing the 9th NBIA Family Conference in Germany from Friday, 16 - Sunday, 18 September at the Heilbronn Youth Hostel. We are delighted to finally be able to give NBIA families in particular, but also doctors and NBIA researchers, the opportunity to get to know each other again after four years. Family conferences are wonderful opportunities to exchange personal experiences, to gain information about current developments in various areas and to ...


Generational change in the Management Board of Hoffnungsbaum

Generational change in the Management Board of Hoffnungsbaum
On 21.11.2021, the annual general meeting of Hoffnungsbaum e.V. (HoBa) took place - with groundbreaking decisions for the future of our NBIA patient organization through the completion of the generational change in the association's management and the reorganization of future board work. Markus Nielbock has now taken over as Chairman of the Executive Board, Sebastian Matthiesen has become Second Chairman and Sigune Lüchtefeld is the new Treasurer. Anja Barthe, Noah Rusch and ...


Guide with recommendations for the treatment of BPAN available

Researchers from various medical institutions around the world, with the support of affected families, have recently published guidelines for the treatment of beta propeller protein-associated neurodegeneration (BPAN). The main purpose of the publication is to support doctors in providing the best possible care for people with this most common form of NBIA today. The article is available online at: It contains recommendations for ...


New BPAN mouse model from Munich now available for researchers

With the publication of a long-awaited paper on a BPAN mouse model, researchers around the world now have access to these mice for study. Scientists led by Dr. Holger Prokisch of the Technical University of Munich have created a strain of mice by inactivating or knocking out the gene associated with beta propeller protein-associated neurodegeneration (BPAN) systemically, throughout the body. ...


PKAN drug screening at Yale University

Since July 2021, a new one-year PKAN research project has been underway at Yale University, New Haven (USA) under the direction of Professor Choukri Ben Mamoun. The project entitled: "A High-Throughput Screening for PKAN-Revising Agents" is funded by a $115,000 joint grant from Hoffnungsbaum e.V.Aisnaf and NBIA Disorders Association. We are contributing $47,500 (€40,595), thanks in part to ...


RARE-X: A new, secure database for exchanging BPAN health data

BPAN sufferers and their families are invited to post health information about the disease on the new, secure RARE-X platform. The purpose of this database is to collect information about rare diseases such as BPAN and make it available for research. By linking data sets from different diseases, researchers can gain new insights that can be of decisive benefit in the development of therapies.

Hoffnungsbaum e.V.
Association for the promotion of research and treatment of NBIA diseases
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