Scientific Meetings

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.