BPAN research project in Cologne - inspired by reports from families

Five NBIA patient organizations from Germany, Italy, the Netherlands, Poland and the USA...
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PKAN online meeting on 25.09.2024 - register now!

Dear families, the exchange between those affected or their families can be incredibly valuable.
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One gift donation becomes two

For some time now, our website has offered the option of using the donation form to...
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NBIA gene therapy updates

Historic donation of 1.2 million dollars provides fuel for PKAN gene therapy A...
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Dr. Ivano Di Meo receives $100,000 grant for INAD research

The NBIA Disorders Association is pleased to announce the results of the call for applications for a scholarship in...
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Global collaboration leads to progress in MPAN research

In November 2022, Hoffnungsbaum e.V. , together with its sister organizations NBIA Disorders...
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CoA Therapeutics discontinues clinical trial for PKAN

It is with a heavy heart that we inform the community that CoA Therapeutics has decided to discontinue...
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Two BPAN research projects funded by MDBR 2023 with $60,000 each

The 10th annual Million Dollar Bike Ride (MDBR), organized by the Orphan Disease Center at the University of...
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Advancing PKAN gene therapy: a collaborative initiative

Research into a gene therapy for pantothenate kinase-associated neurodegeneration (PKAN)...
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NBIAcure prepares application for FDA approval for CoA-Z

NBIAcure, a research team led by Dr. Susan Hayflick and Dr. Penny Hogarth, which...
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