One of the main aims of Euro-ataxia is to accelerate research and treatments for people with ataxia. This co-ordinated effort between our 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. 


Euro-ataxia Patient Charter

Euro-ataxia believes that all ataxia clinical studies should involve the input of people affected by ataxia (patients and their parents or carers) and patient group representatives. Our Patient Charter outlines our vision for this, why it is important, and proposes how it should be implemented.


Research Projects

Over the years Euro-ataxia have provided support for European network projects and have had an advisory role by being on steering comittees on research studies e.g. FP7 European Commission Funded Project on cerebellar ataxias. 

Euro-ataxia is delighted to be now partnering with three newly funded European network projects on the ataxias. These projects have just been awarded funding by the European Commission and Euroataxia will play an active role to esnure their success.

European SCA3/Machado Joseph disease initiative (ESMI): This project will involve 800 patients with spinocerebellar ataxia type 3 from seven European Centres and will involve creating a database with brain imaging scans, standardised clinical assessments and blood samples. This will enable researchers to find information on the progression of the disease and reactions to treatments. This research will be coordinated at the German Centre for neurodegenerative disease in Bonn, Germany. 

Preparing for therapies in autosomal recessive ataxias: This project involves seven centres across Europe and one in Canada. The aim is to develop a large registry of autosomal recessive cerebellar ataxia patients to identify any 'markers' which can indicate whether clinical trials are effective. In addition, it will also help to identify novel mutations or genes which cause recessive cerebellar ataxias, aiding future diagnoses. Lastly, the team (based at the University of Tubingen, Germany) will be focusing in on ataxia with Coenzyme Q10 deficiency and ARSACS to test potential drugs in animal models. This multi-faceted, transcontinental trial is expected to produce some very interesting information which can be used to shape future human trials.

The European Friedreich’s ataxia Consortium for Translational Studies (EFACTS): This is a study originally funded by the European Commission and that will gather vital information about the progression of Friedreich’s ataxia (FA) which can be delivered to patients to give them a better knowledge of their prognosis and the development of their condition. The purpose is to generate a large FA patient database, alongside an integrated clinical and natural history database; this will be linked to a biological samples repository. It also aims to define a panel of clinical assessment tools for use in future trials. There are two Euro-ataxia representatives on the Steering Committee for this project. It is currently supported by grants from Euro-ataxia member groups and pharmaceutical companies.


Research Updates

Euro-ataxia Annual Conference 2019

Euro-ataxia Annual Conference 2018

International Ataxia Research Conference 2017

Euro-ataxia Annual Conference 2016

International Ataxia Research Conference 2015


Research Blogs

ATAXIE - ADCA - SCA: Blog run by Euro-ataxia President Cathalijne van Doorne. Aims to keep people informed about new developments in the field of research into autosomal dominant cerebellar ataxia (ADCA), spinocerebellar (SCA) and other ataxias. Also reports on activities that raise awareness of these rare disorders in European Parliament

Friedreich Ataxia Scientific News: Blog run by Euro-ataxia board member Juan Carlos Baiges. Provides news and information about Friedreich's Ataxia and other topics related to rare diseases.

SCA Source: A website where research on SCAs and related ataxias is written in plain language by SCA scientists. Aims to make research more readily accessible and understandable to ataxia patients and families. 


More Information

For more information on the latest ataxia research, take a look at our member pages and you can also look at our list of suggested websites including other ataxia charities and other useful resources.

If you are a researcher from academia or industry and you are interested in contacting us to find out more about how we could help you, please email [email protected]



ETRAVIRINE position statement

Read our position statement on ETRAVIRINE here: