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You can find an English version of the newsletter online. If it is not automatically translated you can change the language at the very end of it.
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Hoffnungsbaum-Newsletter
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Association for the promotion of research and treatment of NBIA diseases
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There is news about NBIA!
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You can access all contributions at any time at News on our website.
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It is now possible to translate all pages of our website. You will find a small flag in the upper right corner of each page. It is an automated translation and we did not review all pages yet. So please take care and report any translation errors to: webmaster@hoffnungsbaum.de
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You will find all articles in English on our website: News
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On February 10, 2021 Hoffnungsbaum e.V. launched a new online service for our families, especially in German-speaking countries. A loose series of video meetings on various NBIA topics will take place under the title "HoBa persönlich". We are also happy to receive suggestions for topics. The kick-off event focused on beta propeller protein-associated neurodegeneration (BPAN), now one of the most common NBIA variants. In addition to the iron accumulation characteristic of NBIA ...
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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 was an international NBIA research project funded by the European Union under the 7th Research Framework Program (FP7). 13 research institutions, clinical centers, industrial companies and patient organizations from 8 countries worked together as part of a consortium with the ...
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We have received news from the USA that a potential new treatment option for PKAN is being researched at Yale University. This new approach is still at the very beginning of development and a great deal of scientific work and time is still required to sound out the prospects of success of this potential PKAN therapy, initially in cell and animal models. But we are pleased to see another glimmer of hope ...
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You can find some of the presentations online at the following link:
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Association for the promotion of research and treatment of NBIA diseases
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