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 Oct. 13-15 in Lausanne, Switzerland, as part of the 8th International NBIA Symposium. More than 20 scientists and physicians from around the world will present the results of their NBIA projects,...
NBIA Family Conference 2022 postponed!
Hoffnungsbaum e.V. wanted to organize the 9th NBIA Family Conference in Germany in September 2022 in the youth hostel of Heilbronn. We were very much looking forward to finally having a face-to-face meeting of NBIA families again after two years of the pandemic....
Board member Noah Rusch gives 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 Outpatient Children's Hospice Foundation Munich for Rare Disease Day 2022:...
Generation change in the Management Board of Hoffnungsbaum
On Nov. 21, 2021, the annual membership 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 leadership 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 at home in support of BPAN. Friends, relatives and acquaintances were invited to come by our house on their bikes and bring a donation. In return, there were 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 offering for our families, especially in German-speaking countries. There will be a loose sequence of video meetings on various topics relevant to NBIA sufferers....
Review of TIRCON and its relevance to NBIA research and care.
On the topic of movement disorder networks, a retrospective article on TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration) has now appeared in the journal Frontiers in Neurology. From 2011 to 2015, TIRCON is a European Union-funded...
Hoffnungsbaum Info letter 2020
In 2020, we have again compiled an information letter for you. It contains information on the association's activities in 2020 and an outlook for next year. If you always want to be kept up to date, then subscribe to our online newsletter.
Record number of participants at the 7th International Scientific NBIA Symposium
Authors of the original English article: Patricia Wood and Angelika Klucken 160 participants from 26 countries attended the 7th International Symposium on NBIA and Related Disorders, held for the first time as a virtual event. Because online access made it...
Results of the Hoffnungsbaum-survey 2020
In the period August - September 2020 Hoffnungsbaum e.V. conducted a broadband opinion survey among all association members as well as NBIA families in Germany, Austria and Switzerland with whom we are in contact. The aim of the survey was to explore...
