Euro-ataxia, of which Ataxia UK is an active member, is the federation of 22 European ataxia patient organisations. The 2024 Euro-ataxia conference took place in London on 15th-16th November, organised by Ataxia UK. The conference was a great success; fourteen ataxia patient groups, as well as researchers and pharmaceutical representatives gathered to share best practice in healthcare and research.
Talks included updates from clinical trials, patient group presentations, and panel discussions. On the first day, there was a panel discussion chaired by Ataxia UK’s Head of Research, Julie Greenfield. The panel of industry representatives discussed the development of outcome measures in ataxia clinical trials, and the journey of building effective co-operation with medicines regulatory agencies such as the FDA and EMA. Later that day, Professor Paola Giunti shared results on the benefits of Specialist Ataxia Centres in the UK, Italy and Germany, in terms of symptom management, co-ordination of care and referrals, and opportunities to take part in research. Read about the results of this research here.
A number of junior researchers gave lay talks on their research, on topics including research on brain changes in SCA3 and modelling sensory neurons in FA using stem cells. You can watch some of these talks on the Euro-ataxia website.
On the second day, representatives of six ataxia patient groups shared new projects and best practice in providing support to those living with ataxias. Ataxia UK’s CEO Sue Millman gave a talk on the specialist nurse programme in the UK, with a new specialist nurse being employed to support those with ataxias in the South West of England as of January 2025. You can read more about the role of specialist ataxia nurses on our website here.
The President of Euro-ataxia, Andreas Nadke, said
“It is great to see how many people in Europe are pursuing the same goal, fighting against the disease and supporting those affected. For the future, I would like to see even closer co-operation with researchers, pharmaceutical companies and the regulators in the respective countries in order to further improve the lives of people affected. We are happy to support research and the authorisation of new drugs”.
