2022 8th International Symposium on NBIA

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

December 2022 

8th Symposium

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.

 NBIA early career researchers
 Early-career researchers who received travel grant awards. L-R: Drs. Rachel Wise, Özgür Öztop Çakmak, Fatima Efendic, Robert Spaull, Audrey Soo, Apostolos Papandreou, Kenta Shiina, Iankova Vassilena.

Several early-career scientists sent me emails afterward saying how valuable the experience was and that it has motivated them to continue working on NBIA. It also gave them ideas for research and helped them forge collaborations with fellow attendees.

I was encouraged to see our next generation of NBIA researchers participating in the symposium, with several of them already doing important work on projects led by principal investigators who our organization has funded.

The symposium was lively with many questions and ideas from the audience. Several new collaborations were created during sessions, with researchers sharing how they wanted to work together on a specific idea being discussed.

The program committee was led by Dr. Thomas Klopstock of the Ludwig-Maximilians University Munich in Germany and included Drs. Susan Hayflick of the Oregon Health & Science University in Portland, Valeria Tiranti of Foundation Neurological Institute C. Besta in Milan and Agnès Rötig of Institute Imagine in Paris. Lay advocacy partner Markus Nielbock of Hoffnungsbaum e. V. from Germany and I were also committee members. A local organizing committee led by Fatemeh Mollet of NBIA Suisse handled registration and made sure the symposium ran smoothly.

In addition to the symposium, the NBIA Alliance, which consists of our organization and nine sister groups in other countries, met with CoA Therapeutics to get on an update on its work. Afterward, the alliance met to discuss more ways to work together and plans to overhaul the alliance’s website. Four organizations had members attending the symposium in person and the rest joined the meeting via Zoom.

 NBIA Alliance reps
 NBIA Alliance Representatives at symposium L-R: Roberta Scalise, AISNAF; Fatemah Mollet, NBIA Suisse; Joost Schimmel, Stichting Ijzersterk; Patricia Wood, NBIA Disorders Association.


Many thanks to biotech sponsors Chiesi, CoA Therapeutics and Travere Therapeutics, along with NBIA Suisse and Hoffnungsbaum e.V. in Germany who helped make the symposium possible.

Plans were made to hold the 9th symposium in 2024, with the location to be determined later.

 8th Symposium NBIA
 Group photo of participants at the 8th International Symposium on NBIA in Lausanne, Switzerland.


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