Dates
Here you will find current dates, but also reports on events that have already taken place.
PKAN online meeting on 25.09.2024 - register now!
Dear families, the exchange between those affected and their families can be incredibly valuable. Over time, those affected accumulate an enormous amount of knowledge from which others could also benefit. That's why Hoffnungsbaum has launched a new format that...
Cycling for BPAN research - Million Dollar Bike Ride 2023
This year, the Million Dollar Bike Ride (MDBR) at the University of Pennsylvania in Philadelphia is once again raising funds for research into rare diseases. The 10th edition of the charity bike race will take place on June 10, 2023....
December 7, 2022, online lecture: The Gailinger concept for dealing with swallowing disorders
I got to know the "Gailingen concept for dealing with swallowing disorders (not only) in children" during a rehabilitation stay of my son in the Hegau-Jugendwerk. Our son benefited greatly from it and so I am pleased that we can welcome Christina Rauber (MSc and speech therapist)...
October 12, 2022, online lecture: Understanding hereditary developmental disorders better - what you can learn from the natural course of the disease
Steffen Syrbe is a pediatric neurologist and professor of pediatric epileptology at Heidelberg University Hospital. He has been working with children with neurological development disorders for over 15 years. During this time, he has developed a strong interest in genetic causes...
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.
Call for proposals on MPAN research open by May 2, 2022
Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro (AISNAF, Italy), Hoffnungsbaum e.V. (HoBa, Germany), NBIA Disorders Association (NBIADA, USA), and Stichting Ijzersterk (The Netherlands) are soliciting the submission of research projects by...
