Equity for Rare: Delivering fair healthcare systems for people affected by rare conditions (24 February 2026)

Summary

Rare conditions affect over 3.5 million people in the UK. People affected by rare conditions face profound systemic inequity, often experiencing a complicated diagnostic odyssey followed by fragmented care and limited access to treatments. The Genetic Alliance UK 'Equity for Rare' consultation highlights the inequities the rare conditions community experiences, and found that equity broadly means ensuring that people with rare conditions can navigate the healthcare system with the same dignity and efficacy as those with common conditions.

While common conditions are not without their own challenges, they often benefit from established clinical infrastructure, visibility and prioritisation. By contrast, those with rare conditions must navigate a system fundamentally not designed for their specific needs. This report acknowledges that rarity is seldom a standalone challenge and it intersects with broader drivers of inequity such as ethnicity, gender, and socio-economic status.

This report adopts a narrower focus, highlighting that a defining, and immutable, characteristic of all rare conditions in their small patient population. It centres this analysis on how this scarcity is a fundamental driver of inequity for all rare conditions, resulting in three systemic challenges: low priority, limited evidence, and low clinical familiarity. Overcoming these three challenges is essential to delivering a fair healthcare system for those affected by rare conditions.

Content

Genetic Alliance UK is calling on the governments of the UK to:

1. Deliver a UK-wide map of rare conditions: The four UK nations must urgently fund comprehensive rare condition registries and work in partnership to map all 7,000 rare conditions. Robust national data infrastructure is not optional, it is the foundation of equitable service planning, resource allocation, and healthcare delivery.
2. Close the evidence gap through fair research investment: Government and research funders must correct the imbalance in research investment by directing funding towards rare conditions. Decision-makers must also reform evidence standards to recognise that uncertainty is an inherent feature of rare conditions and should not be used as a barrier to access or innovation.
3. Mandate system-wide accountability for rare conditions: Healthcare systems must stress-test policies, commissioning decisions, and service delivery frameworks against the realities of low-prevalence conditions. This must include systematic auditing to identify gaps, eliminate inequities, and enforce consistent standards of clinical accountability across all services.
4. Embed rare conditions into mainstream healthcare delivery: Current reforms across the UK healthcare system present an opportunity to fully integrate rare condition care into routine service provision. Failure to act now will entrench existing health inequalities for the 1 in 17 people in the UK that will be affected by a rare condition at some point in their life.
5. Commit to a bold successor to the UK Rare Diseases Framework: UK governments must commit to a long-term successor to the UK Rare Diseases Framework that delivers measurable improvements for people with rare conditions. This successor must set clear targets, and the nations must respond with adequate funding, directly addressing the structural drivers of inequity identified in this report.

Further reading on the hub:

• Top picks: Rare diseases