9th International Symposium on NBIA held in Türkiye
By Patricia Wood
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| Participants at the 9th International Symposium on NBIA in Istanbul, Türkiye. Sessions were held at historic Istanbul University, founded in 1453. |
The historic and beautiful city of Istanbul was the site of the 9th International NBIA Symposium this past October, drawing a record-breaking in-person attendance of 142 participants from 15 countries, including many new clinicians and scientists.
The event brought together experts to nurture collaborations and share new knowledge and ideas about possible treatments for Neurodegeneration with Brain Iron Accumulation (NBIA) disorders. Sessions covered the latest developments and ongoing research at molecular, biochemical, and metabolic levels. The Symposium Program that includes sessions, speakers CV’s and a short summary of their work can be found in the 9th NBIA Symposium Program.
The 2024 host was Dr. Zuhal Yapıcı, a clinician and professor of Neurology & Child Neurology at Istanbul University, Istanbul Faculty of Medicine, where symposium sessions were held. Yapıcı and her organizing committee did an amazing job hosting the meeting.
In her clinical practice, she treats 125 individuals with NBIA disorders consisting primarily of those with Mitochondrial-Membrane Protein-Associated Neurodegeneration (MPAN), Pantothenate Kinase-Associated Neurodegeneration (PKAN), Beta-Propeller Protein-Associated Neurodegeneration (BPAN), Kufor-Rakeb Syndrome, and PLA2G6-Associated Neurodegeneration (PLAN).
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Patricia Wood with travel award recipients L-R: Drs. Chiara Cavestro of Fondazione IRCCS Neurological Institute C. Besta, Milan, Italy, Alejandra Darling of Hospital Sant Joan de Déu Barcelona, Spain, Valeria Gioiosa of Centre Hospital, University of Bordeaux, Bordeaux, France, Gemma Gasparini of Helmholtz Zentrum München, Munich, Germany, and Jouke Wedman of University Medical Center Groningen, Groningen, Netherlands. |
Since 2014 our organization has provided travel stipends to early-career scientists working on NBIA research. These stipends are awarded to researchers who submit poster abstracts on their work and wish to attend the scientific symposium but might not otherwise have been able to afford it. This year we awarded $2500 in travel stipends to five researchers. We believe that nurturing this new group of researchers is important to help our community grow and bring in new members.
In addition, NBIA Suisse presented Best E-Poster Awards of €500 each to Dr. İbrahim Kamacı from Türkiye and Dr. Eleanor Attridge from the United Kingdom for their respective works, “QSM in Kufor-Rakeb Syndrome” and “Molecular Mechanisms in BPAN.“ A total of 33 e-poster symposium presentations were accepted for the symposium.
For the first time, this year’s symposium began with an afternoon of clinical sessions that attracted many Turkish clinicians who were also invited to attend the scientific portion of the symposium. Topics covered during these sessions included recognizing NBIA patients; the clinical characteristics and long-term follow-up of MPAN patients; the use of botulinum toxin and deep brain stimulation (DBS) in NBIA; electrophysiological aspects of NBIA, including peripheral nervous system involvement with electromyography (EMG) findings; and epilepsy with electroencephalogram (EEG) findings.
In contrast to the United States, Türkiye has a high number of MPAN patients as most identified individuals live in Eastern Europe and Asia. This is partly due to the fact that a high number of marriages in some of these countries are between genetically related individuals. Another factor is that sometimes MPAN is inherited in an autosomal dominant manner, meaning that a single defective gene from either parent is sufficient to cause the disease.
Besides the more common NBIA disorders, there were also sessions on Aceruloplasminemia and Kufor-Rakeb Syndrome which are more prevalent in this region of the world.
Researchers shared their latest findings, followed by lively question and answer sessions after each presentation. There were also plenty of social opportunities to get to know fellow attendees and discuss research ideas and possible future collaborations.
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| Patricia Wood, NBIA Disorders Association, with Fatemeh Mollet who leads the NBIA Suisse organization, at the 9th International Symposium on NBIA. |
As someone who has attended every symposium since the first in 2000, it is inspiring to see how far our NBIA community has come, and the growth in researchers studying NBIA and getting closer every day to finding treatments.
| Scientific Committee | Organizing Committee |
| Bülent Elibol, (Türkiye) | Özgür Öztop Çakmak, (Türkiye) |
| Murat Emre, (Türkiye) | Murat Dilek, (Türkiye) |
| Susan Hayflick, (USA) | Cem Ismail Küçükali, (Türkiye) |
| Thomas Klopstock, (Germany) | Murat Terzi, (Türkiye) |
| Manju Kurian, (UK) | Zuhal Yapıcı, (Türkiye) |
| Susanne Schneider, (Germany) | |
| Valeria Tiranti, (Italy) | |
| Patricia Wood, (USA) | |
| Zuhal Yapıcı, (Türkiye) |
The Symposium Program that includes sessions, speakers CV’s and a short summary of their work can be found on the Symposium Program Booklet.
Many thanks to Gold Sponsors Boston Scientific, Bridge Bio, Çiğdem Dilek & Murat Dilek, the International Parkinson and Movement Disorder Society, and Istanbul University. A full listing of all the sponsors can be found on the final page of the 9th Symposium Program Booklet.
