Latest England Action Plan out
2026 Plan is now live
The latest Action Plan to implement the UK Rare Diseases Framework in England is out today. Minister Ashley Dalton, Parliamentary Under Secretary of State for Health and Social Care, introduced the paper on Tuesday at the Rare Disease Day Westminster reception. As at last year’s event the minister praised Genetic Alliance UK and our members for the advice and support we have provided to this plan’s delivery. The minister also spent time before her speech meeting many of our members and people living with rare conditions.
New action on equity
In the week we published our report Equity for Rare, it is great to see a new action announced – action 40 of the England Rare Disease Action Plan – addressing health inequalities for rare diseases through Core20plus5. Core20plus5 is the national framework set up by the NHS to reduce health inequalities. This is truly using the fundamental infrastructure of the NHS to address the challenge of inequitable care for rare conditions, and puts the inequities our community faces on the map alongside the other causes of inequitable healthcare. Integration into the national system should support addressing intersectionality of causes of inequitable care that includes rare conditions, a key issue addressed by our report.
Genomics England have also responded to the equity theme with two thoughtful discussions of the many aspects of equity in rare conditions from the Chief Ethics and Engagement Officer and from the Clinical Lead for Rare Disease Research.
NICE Quality Standard for Rare Diseases
Today too, NICE launched the first Quality Standard for Rare Diseases. The result of multistakeholder discussion in the UK Rare Disease Stakeholder Forum being turned into action, this is a shift from NICE’s usual approach to the NICE Guideline / Quality Standard interaction, demonstrating welcome flexibility from NICE to account for the challenges of making decisions and enacting policy to support rare conditions. Previously only a handful of Quality Standards have been applicable to either a relatively prevalent single rare condition, or an aspect of a rare condition, such as epilepsy or transition from paediatric to adult care. This Quality Standard addresses the whole pathway of rare, in an inclusive way, bringing in both the undiagnosed community and those with a non-genetic diagnosis. We are keen to see how our members make use of this new Quality Standard, and we will be pushing to see it adopted or adapted for the whole of the UK.
Putting the whole picture together
The UK Rare Diseases Framework and the Action Plans that governments publish to implement it provide an opportunity to show how individual agencies’ activities fit together to make a combined difference to people living with rare conditions. This year it is valuable to see the MHRA’s progress towards reforming regulation for rare condition treatments, discussed alongside the new phase of the combined medicine evaluation process (ILAP), the Rare Therapies Launch Pad, and the continuing work on Action 39 to deliver an operational framework for delivering individualised therapies.
The action plan demonstrates how activity with broader scope can benefit people living with rare conditions. It is valuable to see the Health Data Research Service and NHS Modern Service Frameworks being discussed in the context of the governments’ plans for rare conditions.
Funding for implementation of England clinics for undiagnosed conditions
Last year we had the frustrating news that the process for England to follow Wales into the commissioning of clinics for undiagnosed rare diseases was paused due to funding challenges. It is pleasing to see this blockage released, with the plan suggesting we can expect two pilot clinics to be launched by the Autumn, with one in the south of England and one in the north. We will be working to make sure the SWAN UK community has a say in how these pilots are assessed.
What’s next?
There are many other ongoing actions in the Action Plan, and the four governments of the UK have given us this extra final year to deliver the UK Rare Diseases Framework – but in January 2027, the Framework really does come to an end. So please sign up to make sure your voice contributes to the future of the UK Rare Diseases Framework.