Research Conferences - Ataxia UK

Research Conferences

Ataxia UK Research Conferences

Here you can read all about the ataxia research conferences that our Research team attend and help to organise.

Upcoming Conferences

The Ataxia UK Event for UK-Based Researchers 2023

Ataxia UK is pleased to be hosting a 1-day event for UK-based ataxia researchers on Tuesday 12th September 2023 at St Giles Hotel, Bedford Avenue, London, WC1B 3GH.

The event will include talks from research groups throughout the UK, information on how Ataxia UK can facilitate research, and a panel discussion with people with ataxia on research involvement and engagement. The event will be a great opportunity for networking and collaboration.

Please see the agenda here.

If you are UK-based researcher interested in registering for the event, please contact the Ataxia UK Research Team at

The Inaugural International Congress for Ataxia Research (ICAR) 2024

Ataxia UK, National Ataxia Foundation (NAF), Friedreich’s Ataxia Research Alliance (FARA), and Ataxia Global Initiative (AGI) are pleased to announce the date for the next International Congress for Ataxia Research (ICAR).

ICAR 2024 will take place at the Leonardo Royal Hotel London Tower Bridge in London, UK. Please save the date for November 12-15, 2024.

Past Conferences

The Inaugural International Congress for Ataxia Research (ICAR) took place on 1-4 November 2022

Ataxia UK, the National Ataxia Foundation (NAF), and the Friedreich’s Ataxia Research Alliance (FARA) collaborated to hold the inaugural International Congress for Ataxia Research (ICAR) at the Renaissance Dallas Addison Hotel in Dallas, Texas, USA. Download the programme and abstract book for scientific summaries of the research that was presented.

The Congress combined the best of our organizations’ popular research meetings, including NAF’s Ataxia Investigators Meeting (AIM) and the International Ataxia Research Conference (IARC), co-led by FARA, Ataxia UK, GoFAR, and other partner organisations. ICAR covered aspects of cerebellar function, neurodegeneration, and treatment of ataxias, and provided opportunities to network, as well as to interact with people with ataxia and their families. The scientific steering committee was led by Co-Chairs Stefan-M. Pulst, M.D., Dr. med., Professor and Chair of the Department of Neurology at the University of Utah, USA, and Massimo Pandolfo, M.D., F.A.A.N., F.E.A.N., Professor of Neurology at Université Libre de Bruxelles, Hôpital Erasme, Belgium.

“I am extremely excited to co-chair this new ataxia meeting that will bring together clinicians and scientists from around the world and at all stages of their careers”, says Professor Pulst. “The congress will cover diverse topics ranging from cerebellar function and imaging to novel therapies in sporadic and genetic ataxias”.

As research on Ataxia continues to advance and pharmaceutical interest grows, international collaboration among patient advocacy groups, scientific and clinical researchers, and pharmaceutical companies is more critical than ever.

Professor Pandolfo states, “It is a great privilege to co-chair ICAR 2022, I expect exciting new developments in diagnosis, pathophysiology and particularly treatment. The meeting will be designed in order to maximize interaction, develop existing collaborations and prompt new ones.”

Ataxia UK awarded travel awards to nine UK-based ataxia researchers to help them attend the conference and showcase their research on many different types of ataxia.

Euro-ataxia Annual Research Conference 2021

Euro-ataxia is an international non-profit association whose member organisations work together to help people with progressive ataxia lead their best life. To find out more, please visit:

One of the main aims of Euro-ataxia is to accelerate research and treatments for people with ataxia. This co-ordinated effort between member organisations supports research in a number of ways, such as providing patient input and advice to research studies and assisting in recruitment of participants to trials.

As part of the Euro-ataxia annual meeting, Ataxia UK arranged for researchers from universities and pharma companies to talk about recent research developments in the field of ataxia. The virtual Euro-ataxia annual conference 2021 took place on Friday 18th June 2021 for the ataxia research meeting and Saturday 19th June 2021 was a Euro-ataxia Members only meeting. Please find below the programme of the research meeting and the available presentation slides:

Friday 18th June 2021 - Ataxia research meeting  

1.Welcome, Cathalijne van Doorne (Euro-ataxia President and ADCA Vereniging representative)

2.Results from European spinocerebellar ataxia type 3/MJD Initiative (ESMI) and new SCA research plans, Thomas Klockgether (Bonn University). Presentation available here.

3.Development of an AAV-based miQURE gene therapy for SCA3, Lodewijk Toonen (Uniqure). Presentation available here.

4.Development of therapeutics to prevent onset and/or progression in Repeat Expansion Disorders, Irina Antonijevic (Triplet therapeutics). Presentation available here.

5.TREAT-ARCA – New EU funded Consortium on Recessive cerebellar ataxias, Bernard Brais (Universite’ McGill). Presentation available here.

6.Ataxia Global Initiative and Critical path for ataxia therapeutics Consortium, Holm Graessner (University of Tubingen). Presentation available here.

7.European Friedreich’s ataxia Consortium for Translational Studies (EFACTS) update, Jorg Schultz (Uniklinik RWTH, Aachen).

8.Update on omavoloxolone study in FA, Colleen Stoyas, PhD (Medical Science Liaison Reata Pharmaceuticals Inc.). Presentation available here.

9.Update on FA clinical programme, Marc Martinell (Minoryx).

10.Close of meeting


International Ataxia Research Conferences

International Ataxia Research Conferences (IARC) were held every two years and hosted in a different country every time. Ataxia researchers from across the world come together to share the latest news and results of research.

The first IARC was held in 2015 at Windsor (UK), and hosted by Ataxia UK. It was the largest conference on ataxia ever held, and was incredibly successful.

The second IARC was organised by Ataxia UK, FARA and GoFAR and took place in Pisa (Italy), 2017. It was key for researchers, clinicians and representatives from pharma/biotech companies who have an interest in ataxia research.

The last IARC was held in 2019 in Washington, DC. It was organised by Ataxia UK, FARA, FARA Australia and GoFAR, and was a great success, with over 400 attendees.

Below are the write ups of our past three International Ataxia Research Conferences, which Ataxia UK, along with two other ataxia organisations GoFar and FARA, helped to organise.

Ataxia UK's Research department regularly attend conferences at which ataxia is relevant, including those held by Rare Disease UK, Genetic Alliance, Findacure and many other such organisations. We do this to collaborate with as many organisations as possible, raising awareness of ataxia whilst contributing to research.

IARC 2019 Image

IARC 2019

The latest IARC was held in 2019 in Washington, DC. It was organised by Ataxia UK, FARA, FARA Australia and GoFAR, and was a great success, with over 400 attendees.

IARC 2017 Image

IARC 2017

Ataxia UK together with FARA and GoFAR organised the second edition of International Ataxia Research conference, held in Pisa in September 2017. This was the largest research conference on ataxia ever organised.

IARC 2015 Image

IARC 2015

The International Ataxia Research Conference 2015 took place in Windsor, England on the 25th-28th of March

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