OUR POLICY AND INFLUENCING WORK

Here you will find policy briefings, consultation responses, evidence summaries and case studies drawn from the experiences of people living with ataxia. These materials help inform discussions with government, regulators, clinicians and partners, and highlight the need for earlier diagnosis, improved services and fair access to emerging treatments.

Urgent Update: SMC Decision on Omaveloxolone in Scotland – March 2026

This update explains the Scottish Medicines Consortium’s evaluation of omaveloxolone for Friedreich’s ataxia and what it means for the ataxia community in Scotland. It also highlights the wider context of access to treatment and Ataxia UK’s ongoing advocacy work. Download

Omaveloxolone (Omav) Policy Briefing Note Feb 2026

This brief explains the current barriers to accessing omaveloxolone for people with Friedreich’s ataxia and the urgent need for an interim access route in the UK. Download

Improving Rare Disease Care Across the UK: Lessons from Ataxia

This joint briefing highlights the hallenges people with ataxia face in diagnosis, specialist care and access to support. It sets out policy recommendations to improve rare disease care across the UK. Download 

The OMAV campaign unites the ataxia community to raise awareness, drive advocacy, and push for real progress.

Click here to find out more.

Our OMAV campaign is raising awareness and pushing for progress in research, treatment and support for people affected by ataxia. Together, we are working to make real change.

Click here to learn more about the campaign.

Consultation responses are requested from stakeholders when policy changes or new policy ideas are proposed. Ataxia UK responds to consultations on topics that affect people with ataxia by providing feedback that represents the interests of people with ataxia.

Alongside our consultations and campaigns, Ataxia UK works throughout the year to raise awareness of ataxia and the challenges faced by people living with rare neurological conditions.

We engage with Members of Parliament, policymakers and health leaders to ensure that ataxia remains part of national discussions around rare diseases, research and access to treatments. This includes contributing to parliamentary events, supporting rare disease initiatives and working with partners across the health and research community.

We also collaborate with other charities, clinicians and patient organisations to strengthen the voice of the rare disease community and advocate for policies that improve diagnosis, care and treatment access.

Through this wider policy work, we aim to ensure that the needs and experiences of people affected by ataxia are recognised and reflected in decisions that shape healthcare and research in the UK.

National Clinical Director for Rare Diseases – Joint Letter

This joint letter from organisations across the rare disease community calls for the appointment of a National Clinical Director for Rare Diseases to strengthen leadership and coordination across the UK. The role would help ensure that the needs and voices of people living with rare conditions are better represented in national health policy and NHS planning. Download 

Meet the members who make up our community. Each person brings their own experiences, insights and support to the group.

Barry Hunt
Professor Barry Hunt is a long-standing supporter of Ataxia UK and has served as Scientific Advisor to the charity. With both professional expertise and personal experience of ataxia in his family, he has contributed to strengthening the link between the patient community and scientific research.

Nathan Hall
Nathan Hall is involved in national health policy work through NHS England and contributes insights from the healthcare system to Ataxia UK’s policy discussions. His perspective helps connect patient priorities with wider NHS policy and service planning.

Sue Millman
Sue Millman has been Chief Executive of Ataxia UK since 2007 and has led the organisation’s growth into a national charity supporting research, services and advocacy for people affected by ataxia. She has extensive experience in the voluntary and social care sectors and also serves as Secretary-General of Euro-ataxia, the federation of European ataxia patient organisations.

Email: smillman@ataxia.org.uk

Julie Greenfield 
Dr Julie Greenfield is Director of Research at Ataxia UK and leads the charity’s research programme, working with scientists, clinicians and international partners to advance understanding and treatment of ataxia. Her work focuses on funding research, supporting collaborations and ensuring that people affected by ataxia are actively involved in research developments. She also co-leads the policy and influencing work at Ataxia UK. 

Email: jgreenfield@ataxia.org.uk

John S Graham
John Graham is Director of Fundraising and Communications at Ataxia UK and co-leads the policy and influencing work. He spearheads the charity’s income generation, communications and engagement activities, helping to raise awareness of ataxia and support the funding needed for research, services and advocacy. 

Email: jgraham@ataxia.org.uk 

Salman Khalid
Salman Khalid is Communications and Marketing Manager at Ataxia UK and leads the organisation’s communications strategy across digital platforms, media engagement and storytelling. His work focuses on raising awareness of ataxia, amplifying the voices of the community and supporting campaigns that drive policy change.

Email: skhalid@ataxia.org.uk

Eliana Shekarchi
Eliana contributes to the Policy and Influencing Group by bringing valuable perspectives and engagement with the ataxia community. Her involvement helps ensure that the experiences of people affected by ataxia remain central to Ataxia UK’s advocacy work.

Email: eshekarchi@ataxia.org.uk