The Second Joint International Symposium on Neuroacanthocytosis and Neurodegeneration with Brain Iron Accumulation
70 participants from 14 countries were counted at the 2nd
Joint International Symposium on Neuroacanthocytosis and Neurodegeneration with Brain Iron Accumulation Oct. 26 and 27 in Ede, Netherlands. Dr. Ody Sibon of Groningen and Dr. Giel Bosman of Nijmegen organized the meeting to bring together researchers working on neuroacanthocytosis (NA) and NBIA.
The seeds for this exchange of ideas were planted at the first symposium in Bethesda, Md., in October 2010. Since then, we have witnessed breakthroughs in our understanding of the mechanisms underlying NA and NBIA at the molecular and cellular level. New NBIA genes have been discovered.
It was gratifying to meet and hear from early-career scientists who are studying these disorders. Four young researchers who produced poster presentations of research into NBIA and NA received travel fellowships to the symposium.
You might be hearing their names again. They were: Dario Brunetti from the IRCCS Foundation Neurological Institute “C Besta,” Milan, Italy; Merel Adjobo-Hermans, Radboud University, Nijmegen Medical Centre, the Netherlands; Claudia Siegle-Roos, Max F. Perutz Laboratories, Medical University of Vienna in Austria and Shima Mehrabian, University Hospital “Alexandrovska “ Sofia, Bulgaria.
Three members of our Scientific & Medical Advisory Board, Drs. Susan Hayflick, Penny Hogarth and Paul Kotzbauer were among the 20 scientists who addressed the group on the latest research in their fields. Ginger Irvine of the NA Advocacy group and Angelika Klucken, from the German NBIA group, Hoffnungsbaum e.V., represented the patient organizations. Irvine and her daughter told the group what it was like to live with a rare disease and Klucken discussed the patient organization’s participation in the European Union TIRCON grant.
Also at the symposium, NBIA Alliance representatives discussed plans to develop a “Map of NBIA Experts” with contact details of physicians and clinicians from various countries; holding an international family conference in 2015; creating a Scientific & Medical Advisory Board for the Alliance; and developing an NBIA Health Care Notebook for families for keeping medical records and other important information about their disorder.
Two NBIA Dutch families attending the meeting announced plans to start a non-profit in the Netherlands. That would increase the number of countries with member organizations to seven.