Scientific Meetings

9th International Symposium on NBIA held in Türkiye

By Patricia Wood

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 9^th 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).

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.

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.

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.

8th Scientific Symposium on NBIA held in-person in Switzerland
By Patricia Wood

December 2022 

Meeting in person for the first time since 2017, the 8th International Symposium on NBIA was held in October in scenic Lausanne, Switzerland, on Lake Geneva, attracting 74 participants from 14 countries.

The NBIA Disorders Association has been attending these gatherings of clinicians and scientists since the first one in 2000 — when just 30 people attended — to nurture collaborations and idea exchanges that could lead to new understandings of NBIA and treatments for the disorders.

In addition, our organization, since 2014, has been helping by offering travel stipends to early-career scientists who wish to attend the scientific symposium but couldn’t otherwise afford it. This year, we awarded eight stipends totaling $5,000 to those researchers, all of whom presented research or disease-specific information in poster displays at the symposium.

Record number takes part in 7th Scientific Symposium on NBIA
By Angelika Klucken and Patricia Wood

View Recorded Sessions

This picture is the virtual lobby of the symposium meeting where participants clicked on links to join various activities.

The 7th International Symposium on NBIA & Related Disorders, held as a virtual event for the first time ever, attracted 160 participants from 26 countries. The record number of participants, attributed to the ease of gathering virtually during the COVID-19 pandemic, included world-renowned NBIA scientists and clinicians as well as those who only recently have become involved in NBIA research and care.

The symposium Scientific Steering Committee was led by Dr. Thomas Klopstock of Ludwig-Maximilians University Munich in Germany and included Drs. Susan Hayflick of Oregon Health & Science University in Portland, Valeria Tiranti of Foundation Neurological Institute C. Besta in Milan, Italy, and Agnès Rötig of Institute Imagine in Paris, France. Lay advocacy partners Fatemeh Mollet of NBIA Switzerland, Angelika Klucken of Hoffnungsbaum e. V. from Germany and Patricia Wood of NBIA Disorders Association in the United States were also committee members.

Hosted by the NBIA Disorders Association, the daily agenda included talks by long-standing, experienced NBIA researchers and their team members in which they provided research updates. In addition, researchers new to the NBIA community with expertise in cutting-edge therapies shared and contributed to the exchange of ideas.

The 6th International Symposium on NBIA & Related Disorders was held April 7-8, 2017 at Skamania Lodge, Stevenson, Washington, USA. There were representatives from industry, research and patient organizations among the 67 participants at the symposium.

The Third Joint Symposium on Neuroacanthocytosis and Neurodegneration with Brain Iron Accumulation was held at the La Palma Hotel in Stresa, Italy from October 30 - November 1, 2014. The title of the symposium was "New Frontiers in Neuroacanthocytosis and Neurodegeneration with Brain Iron Accumulation: From Benchside to Bedside."

New breakthroughs in NA/NBIA; towards unraveling underlying mechanisms
Oct. 26-27 in Ede, Netherlands
Sponsored by TIRCON, ZonMW (Dutch Scientific Organization for Medical Research), KNAW (Royal Dutch Academy of Sciences, The Movement Disorder Society, EMINA-I (project financed by the European Community, coordinated by Professor Adrian Danek), Advocacy for Neuroacanthosytosis Patients, Hoffnungsbaum e.V, and the NBIA Disorders Association.

February 18, 2011 in Milan, Italy
At Foundation IRCCS, Neurology Institute “C Besta”. Sponsored by “C Besta” and Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro (AISNAF).

October 1-2 in Bethesda, MD
Sponsored by the National Institute of Neurological Disorders and Stroke (NINDS), the Office of Rare Diseases Research (ORDR), National Institute of Child Health & Human Development, The Movement Disorder Society, Glaxo Smith Kline, Mount Sinai Medical Center, Advocacy for Neuroacanthocytosis Patients, AISNAF (Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro), Hoffnungsbaum e.V. and the NBIA Disorders Association.

November 28, 2009 in Munich, Germany
Arranged by Professor Thomas Meitinger. Sponsored by Technical University.

May 19-20 in Gaithersburg, MD
Sponsored by the National Institute of Neurological Disorders and Stroke (NINDS) and the Office of Rare Diseases (ORD) at NIH along with the NBIA Disorders Association.

May 19-20 in Bethesda, MD
Sponsored by the National Institute of Neurological Disorders and Stroke (NINDS) and the Office of Rare Diseases (ORD) at NIH along with the NBIA Disorders Association.