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. 

Omav Policy Briefing Handout July 2026

Our drop-in event in Parliament on July 1st marked an important milestone for the #AccessOmavNow campaign as several MPs and Peers joined Ataxia UK in Parliament to hear first-hand the experiences of families affected by Friedreich's Ataxia and discuss the urgent need for interim access to omaveloxolone (Omav) and wider reform of rare disease medicines. This Policy Briefing Handout sets out the case for immediate interim access to omaveloxolone and fairer medicines appraisal processes so people with Friedreich's Ataxia can access the treatments they urgently need.

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 challenges 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 

On our dedicated Omav Updates page, you can keep track of all the latest news and developments including information about access in the devolved nations and a full timeline of events. 

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.

Ataxia UK responds to consultations on a variety of topics relevant to people living with ataxia including rare diseases, genetics, neurology services, medicines regulation and more. Consultation responses are requested from stakeholders when policy changes or new policy ideas are proposed. We provide feedback that represents the interests, views, and experiences of people with ataxia. Below is a summary of our consultation responses.  

2026 

Neurology services 

• Ataxia UK reviewed the Neurological Alliance’s report draft making the case for a Modern Service Framework for neurological conditions. The final report is pending. 

• Ataxia UK reviewed the Neurological Alliance’s briefing on the Future of Neurological Treatments. The final report is pending. 

Rare disease care 

• Ataxia UK responded to a consultation on the NICE Rare Disease draft quality standard. Quality standards are documents that set out priority areas for quality improvement in an area of healthcare. The idea is that care provided can be measured against these recommendations. The NICE Rare Disease Quality Standard can be accessed here.  

NHS pathway for treatments for genetic conditions 

• Ataxia UK and CureDRPLA responded to the Department of Health and Social Care’s scope for a framework that is under development for individualised genetic therapies. To read more click here.  

2025 

Drug approval and reimbursement 

• Ataxia UK responded to a consultation seeking views on proposals to amend the way in which the NICE cost-effectiveness threshold is determined by granting power to the Secretary of State for Health and Social Care to direct NICE with respect to the standard cost-effectiveness threshold that it uses in the development of its guidance and recommendations. Read the outcome of this consultation here.  

• The UK’s medicines regulatory body, the MHRA, published plans to reform medicines regulatory systems for rare diseases. Ataxia UK will be contributing to the consultation phase of this project set to begin in early 2026, by representing the views of people with ataxia. To read more click here.  To read the MHRA policy paper click here.  

Pre-implantation genetic testing  

• Ataxia UK has provided numerous responses over the years to pre-implantation genetic testing (PGD) consultations including for: DRPLA, FA, SCA14, SCAN3, SCA2, SCA6, SCA3, SCA1, SCAR17, SCA20, Ataxia pancytopenia.  

2025: Pre-implantation genetic testing approved to diagnose SCAN3 - Ataxia UK 

2024: Pre-implantation Genetic Testing licensed in UK for SCAR17 - Ataxia UK 

2022 

• Ataxia UK responded to the NHS England, NHS Improvement and NICE proposals for the Innovative Medicines Fund. 

2021 

• Sue Millman, Ataxia UK’s CEO, was involved in a number of the consultations involved in the development of the UK Rare Disease Framework which was launched in 2021 to improve diagnosis and treatment of rare diseases. To read more click here. 
   

Prior to 2021 
 

2019 

• Ataxia UK submitted a Patient Group Submission to the Scottish Medicines Consortium (SMC) for Botulinum toxin for drooling to SMC. This involved a survey of people with ataxia. Read the SMC outcome here.  

2018 

• Ataxia UK responded to a consultation on NICE Guidelines on Suspected Neurological Conditions.  

2015 

• Ataxia UK responded to a document produced by the Neurosciences Clinical Reference Group on specialised neurology services and how they will be commissioned. 

2012 

• Ataxia UK responded to a consultation on the UK Plan for Rare Diseases.  

2011 

• The Royal College of Nursing sought patients’ views and opinions about the care they receive from clinical nurse specialists and nurse consultants, and their ideas about the best ways of assessing or measuring nurse performance. An Ataxia UK representative (person with ataxia) attended focus group meetings.   

2010 

• Ataxia UK responded to a consultation on ‘Revision of the Directive 98/79/EC on In Vitro Diagnostic Medical Devices’. 

2009 

• Ataxia UK responded to the NHS Quality Improvement Scotland draft clinical standards for neurological health services consultation.  
   

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. 

We work particularly closely with the following organisations who are active in campaigning for policy change in the UK: Neurological Alliance, Genetic Alliance UK, Association of Medical Research Charities (AMRC)  . 

We also work closely with our partners in Euro-ataxia working on policy in particular focusing on research and drug regulations in Europe. 

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.

Thriving not surviving: A right to Neuro Rehab

This MS Society UK-wide consensus statement for people living with progressive neurological conditions is endorsed by Ataxia UK. Download.

Neurological Conditions: The case for a Modern Service Framework (MSF)

Ataxia UK endorses this report, developed by the Neurological Alliance with the MS Society and supported by organisations from across the sector, which makes the case for a dedicated Modern Service Framework for neurological conditions and the actions necessary to deliver. Read more about this here. Download the report here.

NICE Rare Diseases Quality standard

Ataxia UK endorses the NICE Rare Diseases Quality standard. NICE Quality standards set out priority areas for quality improvement in health, public health and social care. This quality standard covers diagnosing, managing and treating rare diseases in children, young people and adults. Read more about it here.

The Neurological Alliance Open Letter to the Secretary of State for Health and Social Care

The Neurological Alliance and 36 of its member organisations representing people affected by neurological conditions, researchers and healthcare professionals, including Ataxia UK's CEO, Sue Millman, have signed the open letter calling on the Government to take urgent action to strengthen the specialist neurological workforce. Read the letter here.

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 is also the Board member of Genetic Alliance UK and the Neurological Alliance 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 helping to promote and advance ataxia 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  

Eliana Shekarchi-Khanghahi 
Eliana, Ataxia UK’s Science communications intern, contributes to the Policy and Influencing Group by bringing valuable expertise and perspectives from her previous work in the NHS and her own personal experience of ataxia in her family.  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