Genetic Alliance UK is exploring the theme of equity for rare conditions as part of our Rare Disease Day 2026 campaign.
A definition of equity
EURORDIS-Rare Diseases Europe defines equity as ‘meeting people’s specific needs and eliminating barriers preventing their full participation in society.’
A rare condition is any condition that affects less than 1 in 2,000 people. There are over 7,000 rare conditions with more being discovered all the time through scientific progress.
1 in 17 people will be affected by a rare condition at some point in their lives. This equates to approximately 3.5 million people across the UK. Eight out of 10 rare conditions are also genetic conditions (so the result of a change in an individual’s DNA sequence).
Rare diseases include rare cancers such as childhood cancers, rare infections diseases, and some other well known conditions, such as cystic fibrosis and Huntington’s disease.
People living with a rare condition face many challenges with accessing health and social care services. This can happen because of many reasons including a lack of knowledge among healthcare professionals to support timely diagnosis and appropriate treatment, or limited access to specialist centres where care is provided.
Other factors can also influence health outcomes and people’s experiences of healthcare, such as ethnicity, sex, socioeconomic status and where people live.
People with a rare condition may have worse health outcomes than people in the general population due to the limited services and support available to them, and the support for people with different rare conditions is highly variable.
Differences in health opportunities and outcomes which are systematic, avoidable and unfair are defined as health inequities, which are important to address to ensure that services are equitable for all people in the UK. (England 2025 Rare Disease Action Plan - summary of health inequity scoping review)
Why complete this survey?
Your response to this survey will help with understanding what equity means to you and your community. Your views are key to personalising our campaign and connecting our messages to real experiences.
To show the stories behind the statistics, we want to hear about your experiences of accessing healthcare for rare conditions and how those experiences may have felt fair (equitable) or unfair (inequitable).
Your answers will inform our messaging and help us to develop resources and content ahead of Rare Disease Day 2026. Rare Disease Day is a key part of our public awareness campaign, designed to raise awareness of genetic, rare and undiagnosed conditions in the UK. All resources will be shared on the Genetic Alliance UK website.
We welcome contributions from people with genetic, rare and undiagnosed conditions, carers, family members, health professionals, support organisations, researchers and anyone connected to rare conditions.
The survey will close at 17:00 on Tuesday 6 January 2026.
Thank you for supporting the Rare Disease Day 2026 campaign.
If you have any questions, please contact rarediseaseday@geneticalliance.org.uk
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