Hoffnungsbaum e.V.
Hier geben wir Ihnen Einblicke in die aktuelle Vereinsarbeit von Hoffnungsbaum e.V..
8th International Symposium on NBIA in Switzerland
NBIA scientists will meet to exchange information about their research from October 13-15 in Lausanne, Switzerland as part of the 8th International NBIA Symposium. More than 20 scientists and physicians from all over the world will present the results of their NBIA projects...
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
In an interview, Noah Rusch shares insights into the challenges and family life with his son Laurin, who suffers from BPAN. The interview was published by the Ambulantes Kinderhospiz München Foundation for Rare Disease Day 2022:...
Generation change on the Board of Hoffnungsbaum
On November 21, 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. It is intended to be a loose series of video meetings on various topics relevant to those affected by NBIA....
Review of TIRCON and its significance for NBIA research and care
Regarding the topic of "Networks for Movement Disorders", a retrospective article about TIRCON (Treat Iron-Related Childhood-Onset Neurodegeneration) has now been published in the journal "Frontiers in Neurology". TIRCON was funded by the European Union from 2011 to 2015...
Hoffnungsbaum newsletter 2020
We have compiled another information letter for you in 2020. It contains information about the association's activities in 2020 and an outlook for the coming 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, which took place as a virtual event for the first time. Since the online access...
Results of the 2020 Hoffnungsbaum
Between August and September 2020, Hoffnungsbaum e.V. conducted a broad opinion survey among all 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...
