Hoffnungsbaum e.V.
Here we give you an insight into the current association work of Hoffnungsbaum e.V..
8th International Symposium on NBIA in Switzerland
NBIA scientists will meet to share their research from October 13-15 in Lausanne, Switzerland, at the 8th International NBIA Symposium. More than 20 scientists and physicians from all over the world will present the results of their NBIA projects in...
NBIA Family Conference 2022 postponed!
Hoffnungsbaum e.V. wanted to host the 9th NBIA Family Conference in Germany in September 2022 at the Heilbronn Youth Hostel. We were very much looking forward to finally being able to get an in-person meeting of NBIA families again after two years of pandemic.
Board member Noah Rusch gives an interview on Rare Disease Day
Noah Rusch gives insights into the challenges and family life with his son Laurin, who suffers from BPAN, in an interview. The interview was published by the Munich Outpatient Children's Hospice Foundation to mark Rare Disease Day 2022:...
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...
Cycling for Laurin as part of the Million Dollar Bike Ride
As part of the Million Dollar Bike Ride (MDBR), we started a fundraiser in our backyard for BPAN. Friends, relatives and acquaintances were invited to come by by bike and bring a donation. In return, there was fresh...
First online lecture: 28 participants at lecture on BPAN research in Tübingen
On February 10, 2021, Hoffnungsbaum e.V. launched a new online service for our families, especially in German-speaking countries. There will be a loose sequence of video meetings on various topics relevant to NBIA victims....
Review of TIRCON and its significance for NBIA research and care
A retrospective article on TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration) has now been published in the journal "Frontiers in Neurology" on the subject of "Networks for movement disorders". From 2011 to 2015, TIRCON is a project funded by the European Union...
Hoffnungsbaum Newsletter 2020
We have once again put together a newsletter for you in 2020. It contains information on the association's activities in 2020 and an outlook for next year. If you would like to be kept up to date, please subscribe to our online newsletter.
Record number of participants at the 7th International Scientific NBIA Symposium
Authors of the original article: Patricia Wood and Angelika Klucken 160 participants from 26 countries attended the 7. International Symposium on NBIA and Related Diseases, which was held as a virtual event for the first time. Since online access makes it easy to...
Results of the Hoffnungsbaum survey 2020
In the period August - September 2020 Hoffnungsbaum e.V. conducted a broad-based opinion survey among all association members and NBIA families in Germany, Austria and Switzerland with whom we are in contact. The aim of the survey was to explore...
