Ataxia UK believes strongly in working collaboratively and thus works in partnership with a number of ataxia organisations around the world. The ataxias are rare conditions making such collaborations particularly important in the effort towards the developments of treatments for people with ataxia.
We are an active member of Euro-ataxia, the federation of ataxia charities across Europe. Our CEO, Sue Millman, is the Secretary General of Euro-ataxia, which currently consists of 22 member organisations across 16 countries. We actively collaborate with individual member groups of Euro-ataxia.
Within the UK, Ataxia UK partners with a number of organisations, including the AT Society, a charity supporting those with a type of ataxia called Ataxia-Telangiectasia. We are active members of the Neurological Alliance, the organisation that campaigns for people with neurological conditions. Ataxia UK is also a member and works closely with Genetical Alliance UK and Rare Disease UK, the umbrella organisations working for people with genetic conditions and rare conditions respectively.
Ataxia UK also works closely with ataxia organisations worldwide. In 2020, we started a collaboration with CureDRPLA – a charity focused on a rare type of ataxia called DRPLA. This collaboration has resulted in Ataxia UK employing a dedicated DRPLA Research staff member who coordinates the activities, such as the funding of research projects, the initiation and management of a DRPLA patient registry, and a global natural history study.
We partner with the two US ataxia organisations FARA and NAF, and the Canadian organisation, the ARSACS Foundation. Partnerships include sharing of information and collaborating actively in research initiatives including joint funding of research projects.
We also partner with the SCA27b Ataxia Foundation in the US, to provide information to those living with and affected by SCA27b, and recruit participants to research studies and clinical trials on this condition.
In November 2024, Ataxia UK held the International Congress for Ataxia Research (ICAR) in London, which was a collaboration with our partner organisations Ataxia Global Initiative,
FARA and NAF. Over 600 people attended, including researchers, industry representatives, clinicians and patient organisation representatives. Read more about ICAR 2024 here.
