On October 28th-29th 2025, Euro-ataxia hosted the International Ataxia Patient Conference in Amsterdam. This two-day event was attended by representatives from 18 ataxia patient organisations from Europe and North America. We were also joined by representatives from six pharmaceutical companies, and a number of ataxia researchers. We heard updates on clinical programmes on a range […]
Reflections on the 2025 Euro-ataxia conference Read More »
The pharmaceutical company Lexeo Therapeutics has announced positive updates from their phase I/II trial of the gene therapy LX2006 to treat cardiomyopathy in Friedreich’s ataxia (FA). Interim data has shown sustained or deepening improvements in most participants across both cardiac and neurological measures of FA. This includes clinically meaningful improvement in the modified Friedreich Ataxia
Lexeo shares positive data in trial of LX2006 for FA cardiomyopathy Read More »
Ataxia UK has worked closely with researches at the London Ataxia Centre and other experts on a research study assessing the impact of specialist ataxia centres (SACs) in Europe. This was part of the Value of Treatment (VoT) project supported by the European Brain Council, a non-profit organisation which promotes brain research to improve the
The International Congress for Ataxia Research (ICAR) 2024 took place in London from 12th – 15th November. It was organised by Ataxia UK, the National Ataxia Foundation, the Friedreich’s Ataxia Research Alliance, and the Ataxia Global Initiative. This was the biggest ICAR yet, with 600 in-person attendees and 50 attending online from 32 countries, including researchers,
Highlights of the International Congress for Ataxia Research 2024 Read More »
Ataxia UK has worked closely with the London Ataxia Centre researchers and other experts on a research study assessing the impact of specialist ataxia centres in Europe. This was part of the Value of Treatment (VoT) project supported by the European Brain Council, a non-profit organisation which promotes brain research to improve the lives of
