Guide with recommendations for the treatment of BPAN available

from | December 14, 2021

Researchers from various medical institutions around the world, with the support of affected families, recently published a guide for the treatment of beta-propeller protein-associated neurodegeneration (BPAN). The primary purpose of the publication is to support physicians in providing the best possible care for people with this most common form of NBIA today. The article is available online at:

It contains recommendations for the evaluation and treatment of individuals with beta-propeller protein-associated neurodegeneration (BPAN), developed by experienced experts in the treatment of this disease. The guide covers the clinical manifestations and progression of the disease, imaging findings, epilepsy features and genetics. In addition, the article contains suggestions for doctors, ranging from the initial examination to the treatment of the disease throughout life.

Most doctors have free access to the full article. Therefore, we would like to encourage all families affected by BPAN to inform their treating physicians about it and to discuss the results with them. The manuscript of the treatment recommendations is currently not available to the general public free of charge. However, the main and most important contents were presented by Markus Nielbock, the chairman of Hoffnungsbaum e. V., inserted into the corresponding German Wikipedia article:

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