Progress at NBIA Symposium & NBIA Alliance Meeting

by | May 3, 2017

The latest research findings were presented at the 6th International Symposium on Neurodegeneration with Brain Iron Accumulation (NBIA) and Related Disorders. Around 70 doctors, scientists and patient representatives from 12 countries came together at the symposium in Stevenson, USA, in April. Thanks to the awarding of travel grants to young scientists, numerous "new faces" from the NBIA community were among them. From Germany Hoffnungsbaum e.V. represented by our long-standing colleague Heike Jaskolka. Prof. Dr. Thomas Klopstock and Dr. Ivan Karin from the NBIA Clinical Center at the Friedrich Baur Institute of the Ludwig-Maximilians-Universität (LMU) Munich took part. They were joined by Prof. Dr. Adrian Danek from the Neurological Clinic. Geneticist and NBIA researcher Dr. Arcangela Iuso was able to attend on behalf of the NBIA research group at the Institute of Human Genetics at the Technical University (TU) of Munich. The conference included lectures on current NBIA research and treatment options, poster presentations and discussion panels. The thematic focus was on the three NBIA forms PKAN, PLAN and BPAN. The program also offered participants time and space to engage in personal discussions and make valuable contacts.

It became clear at the conference that these are promising times. The field is not only growing in terms of the aforementioned young scientists and newly discovered NBIA genes, but also in terms of therapeutic studies. News was also exchanged at the one-day meeting of the NBIA Alliance held immediately before the symposium. Together, the members defined the next projects and tasks of the international umbrella organization. In addition to consolidating the patient network, these include in particular the sustainable promotion of the international NBIA patient register and the expansion of public relations work. In addition to Hoffnungsbaum e.V. 6 other patient organizations were represented, including for the first time from Hungary.

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