23.07.2025
Gene Therapy
In the US a first child has been treated with a IRF2BPL Gene therapy, for more info please see
20.07.2025
The Stiftung Bostelmann has supported our non-profit Organisation
The Hamburg based non pofit organisation Stiftung Bostelmann has made a donation to us which will be used to support Heidi Olzschas research on IRF2BPL at the Medical School Hamburg. Thanks a million to the Stiftung Borstelmann for the support!
08.8.2023
Funding for NEDAMSS Research
The Alliance for Rare / Eva-Luise und Horst Köhler Stiftung has funded a research project pediatric neurologists and basic researchers from Göttingen and Berlin to understand NEDAMSS and find a therapy. The project combines a clinical Natural History Study in Göttingen (Hendrik Roswewich, Göttingen) with phenotyping / drug repuposing (Jakob Metzger, Pawel Lisowski, MDC Berlin). Thanks a million to the researchers and the Alliance for Rare for supporting it!!!!
https://elhks.de/en/forschung-nedamss/
08.08.2023
Natural History Study for kids (until age 18) with irf2bpl mutations from Germany
This Natural History Study is in planning to take place at Klinik für Kinder- und Jugendmedizin der Universtätsmedizin Göttingen. If you are intererested to register your child in that study, please contact Dr Steffen Köhne at Klinik für Kinder- und Jugendmedizin der Universitätsmedizin Göttingen: steffen.koehne@med.uni-goettingen.de
15.07.2023
Family Portrait
The Eva Luise and Horst Köhler Foundation for People with Rare Diseases included our family in a film project. Thanks a million to that wonderful foundation that has supported and helped us immensenely in our attempts to find a cure for our son and other kids with irf2bpl mutations
30.06.2023
Thanks for your Support: Zulip!
Huge Thanks to ZULIP who are providing our research community with a cost free teamchat platform. Zulip is an open-source modern team chat app designed to keep both live and asynchronous conversations organized. We use ZULIP to stimulate synergy among the irf2bl community and inform everyone about publications or funding calls. If you are a researcher and are interested in receiving access, please contact us.
01.03.2023
Foundation of a non profit organisation
In order to be able to do lobby work, support research and fundraise money for researchers we founded the non-profit organization IRF2BPL Support Group Europe – Verein zur Unterstützung von Patient*innen mit einer Mutation des IRF2BPL Gens e.V. In case you would like to support our search for a cure, you are welcome to donate. With money fundraised we will be supporting irf2bpl research, most of all the research by Pawel Lisowski at the MDC in Berlin. Please contact us, in case you donate and need a donation receipt. Our bank details:
Irf2BPL Support Group / IBAN: DE91 4306 0967 1280 088101