Natalie Frankish
Director of Public Affairs, Genetic Alliance UK
Rare conditions affect 1 in 17 people in the UK. We need an equitable healthcare system to meet their needs.
Scarcity of rare
Genetic Alliance UK’s Equity for Rare report, launched on Rare Disease Day 2026, highlights that small patient populations are an immutable characteristic of these conditions. This leads to systemic challenges: low priority in national planning, limited clinical familiarity and a scarcity of evidence to inform decision-making and service planning.
Defining healthcare equity for rare
For the rare community, equity represents a system where the prevalence of a condition doesn’t dictate the quality of support. Genetic Alliance UK’s recent community survey to understand what equitable healthcare looks like for rare conditions shows that equity means timely diagnosis, coordinated care and healthcare systems designed with rare in mind.
represents a system where the prevalence of a
condition doesn’t dictate the quality of support.
Mapping rare
As the UK undergoes significant NHS reform, including the 10 Year Plan for Health in England and upcoming devolved nation elections, we have a unique window to build equity into the foundations of the UK’s healthcare systems. To achieve this, the four nations must fund rare conditions registries and collaborate to work towards comprehensive mapping of all 7,000 conditions1. Without understanding the scale of rare conditions, healthcare systems cannot plan for them.
Framework for the future
While the UK Rare Diseases Framework has started this work, a comprehensive scoping exercise remains the essential next step to uncover the true scale of rare conditions in the UK. By addressing these gaps now, we can ensure future healthcare systems are built upon a thorough understanding of the needs of the 3.5 million people1 living with rare conditions in the UK.
Ultimately, rare conditions will serve as a bellwether for healthcare systems. If the systems can deliver appropriate healthcare for those with rare conditions, they’ll inevitably create a more agile, data-driven and equitable infrastructure that benefits all.
[1] National Genomics Education Programme. (2024). Introduction to Rare Disease. NHS England.
