Collaborations - Ataxia UK


Our Research Partners

Ataxia UK believes strongly in working collaboratively with ataxia and other organisations around the world. The ataxias are rare conditions making such collaborations particularly important in the effort towards the development of treatments for people with ataxia.

Ataxia organisations
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 nineteen member groups. For more information on euro-ataxia, please take a look at our Euro-ataxia leaflet.

Ataxia UK also works closely with ataxia organisations worldwide such as the two US organisations: FARA and NAF, the Italian organisation GoFAR, and the Australian charity FARA-Australia. Partnerships include sharing of information, and collaborating actively in research initiatives including joint funding of research projects.

In November 2019, September 2017 and March 2015 we held our International Ataxia Research conferences for researchers in Washington, USA, Pisa, Italy and the UK respectively, in partnership with GoFAR and FARA.

Partnerships with pharmaceutical companies
The ataxias are rare conditions and thus have not received much attention or resources to develop treatments, hence the lack of approved treatment for the majority of ataxias. However, they do offer opportunities for pharmaceutical and biotech companies to make a huge impact, in particular through being the first to develop an approved treatment. Ataxia UK will highlight the opportunities that are available to pharmaceutical and biotech companies if they enter the ataxia field. In addition, Ataxia UK will continue to play a pivotal role in assisting researchers in academia and industry by:

  • providing information and advice on the research landscape
  • facilitating meetings and introductions
  • explaining the impact ataxia has on people with the condition
  • facilitating patient involvement in research design

We are pleased to be partnering with a number of companies at different stages in development. We have made a short leaflet highlighting what Ataxia UK can offer in a partnership (view the extended version here), and which key roles we can play in working together with companies. For an early-stage research example, see our collaborative drug discovery programme in Friedreich’s ataxia with Pfizer.

Ataxia UK has been partnering with a number of pharmaceutical and biotech companies who are running or developing clinical trials, such as Reata, Intrabio and Takeda.

We welcome approaches from new potential partners. Please contact the Head of Research at

Partnerships with other charities and organisations
Ataxia UK works closely with a number of charities and organisations with shared interest. We are members and work collaboratively with Genetic Alliance UK, Rare Disease UK, the Neurological Alliance and the Association of Medical Research Charities. A recent partnership with the rare disease charity Findacure on a research project in Friedreich’s ataxia is another example of a successful partnership.

Ataxia UK has a collaborative relationship with CureDRPLA. CureDRPLA is a US-based non-profit organisation founded by Paul and Andrea Compton. The mission of CureDRPLA is to connect families, physicians and scientific investigators to further Dentatorubral-pallidoluysian atrophy (DRPLA) research. Both Drs. Julie Greenfield and Silvia Prades from Ataxia UK are involved in the DRPLA Research Programme. Ataxia UK and CureDRPLA are working with industry and academic partners to facilitate the rapid progression of clinical studies for novel DRPLA therapeutics.

We have also had our Medical Guidelines: management of the ataxias towards best clinical practice endorsed by the European Reference Network for Rare Neurological Diseases (ERN-RND).

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