Unpacking the 2026 England Rare Disease Action Plan: representing rare neurological conditions

16/03/2026

Ahead of Rare Disease Day 2026 (28 February), the Department of Health and Social Care published the latest England Rare Disease Action Plan (available here) . Our Policy and External Affairs Manager, Sam Mountney, shares his thoughts.

The 2026 England Action Plan represents the fifth and final plan under the current UK Rare Disease Framework (available here) , setting out progress against 39 actions from previous plans as well as introducing a new action on tackling health inequalities in rare diseases.

Around half of all rare diseases have neurological features. As members of the England Rare Disease Patient Advisory Group coordinated by Genetic Alliance UK, we were pleased to once again contribute to the development of the 2026 Action Plan.

Neurological conditions are well represented throughout the 2026 Action Plan. The plan references several policy developments relevant to people affected by rare neurological conditions, including the National Institute of Health and Care Excellence (NICE) guideline on rehabilitation for chronic neurological conditions, the updated adult neurology service specification, and the new NICE Quality Standard for Rare Conditions.

Taken together, these developments recognise both the complexity of rare neurological conditions and the need for coordinated, specialist care. Ensuring these policies are fully implemented will be essential to translating this recognition into meaningful improvements for people affected by rare neurological conditions.

Ongoing priorities and new themes

Actions set out in previous plans are informed by four key national priorities that underpin the UK Rare Disease Framework – helping patients get a faster diagnosis, increasing awareness amongst healthcare professionals, better coordination of care and improving access to specialist care, treatment and drugs.

Alongside these national priorities, the 2026 Action Plan has an additional focus on two underpinning themes:

• Health equity
• Digital, data and technology

Tackling health inequities

In response to evidence around health inequities faced by people affected by rare conditions, the 2026 Action Plan commits to including rare conditions as part of the NHS England Core20PLUS5 programme, the national initiative designed to reduce health inequalities across England. More information about the Core20Plus5 programme is available here.

As part of this new action, an implementation plan will be developed and delivered over the next three years to embed rare diseases in this important programme.

Improving data for rare conditions

Better data is critical to improving treatment, care and support for people affected by rare neurological conditions. Currently, poor quality and fragmented data for rare conditions is a challenge for clinicians, researchers and organisations working to improve services – it holds back our ability to plan effectively and deliver personalised support.

The 2026 Action Plan highlights ongoing work to strengthen rare disease data in England. NHS England’s National Disease Registration Service (NDRS), including the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), already plays a central role in improving understanding of rare diseases by bringing together national data to support better identification, research and service planning. Building on this, work is underway to develop a Rare Disease Data Set specification to support clinicians in submitting data more consistently and improve the standardisation of rare disease registration.

Alongside this, NHS England is exploring approaches to enable self-reporting of rare diseases through NCARDRS. This would allow people to report their conditions directly to national databases, helping to strengthen and expand the data available on rare diseases. Recommendations from the Department of Health and Social Care on the next steps for this work are expected in April 2026.

Improving care coordination

Effective and equitable care coordination is vital to improving experiences and outcomes for people affected by rare neurological conditions. The 2026 Action Plan notes important progress including the publication of the first Quality Standard for rare conditions. Quality standards are published by the National Institute of Health and Care Excellence (NICE) and set out what good care looks like to support service improvement.

The standard includes eight quality statements covering the whole pathway of care from the point at which people present with a suspected rare condition and includes statements on the need for a named healthcare professional to co-ordinate care as well as ensuring people can access physical, psychological and emotional support throughout care pathways. The Alliance supported the development of the quality standard as members of the project  steering group.

Improving services for people affected by rare neurological conditions

The Plan also references recent guidance specific to people affected by rare neurological conditions, including the NICE guideline  on rehabilitation for chronic neurological conditions and the revised adult neurology service specification.

Taken together, they represent an important step forward in recognising the challenges facing services and support for people affected by rare neurological conditions. However, they need to be fully implemented to ensure they deliver meaningful improvements in services and support.

Addressing workforce challenges

Ongoing shortages across the clinical neuroscience workforce have an impact across the neurological community, including people affected by rare neurological conditions. The Department of Health and Social Care expects to publish the 10-Year Workforce Plan in Spring 2026. Ahead of publication, the Department has committed to recognising and incorporating the needs of genomics and rare diseases including work to refine the baseline for priority professions and identify skills and supply gaps. 

Together with over 40 leading professional bodies and patient organisations, the Alliance has set out recommendations  to deliver a clinical neuroscience workforce fit for the future. We will continue to promote these as part of conversations around the future of the workforce.

Shaping the future of rare conditions policy

Despite the one-year extension of the UK Rare Disease Framework until March 2027, there is uncertainty around the future of rare conditions policy beyond this point. We are backing Genetic Alliance’s calls to extend the framework beyond March 2027 and we are pleased to have been invited to join a new steering group led by Genetic Alliance UK, supporting a national programme of engagement to inform the future of the Framework. We will continue working closely with our fantastic rare conditions member organisations and people affected by rare conditions to ensure that the voices and experiences of the rare neurological community are firmly included.