Genetic Alliance UK is an alliance of over 220 charities and support groups working to improve the lives of people with genetic, rare and undiagnosed conditions. As part of that work, we want to hear your views on what future UK policy for rare conditions should look like.
A policy is an official plan that sets out what the government will do and why. It guides decisions and helps make sure the right things get done.
Since 2021, the UK Rare Diseases Framework has been the UK-wide policy for improving life for people living with rare conditions. It set out four priorities and five underpinning themes which we will ask about in the survey. Read Genetic Alliance UK’s factsheet on the UK Rare Diseases Framework.
What's happening now?
The Framework is coming to an end, with a one-year extension agreed across the UK until January 2027. Genetic Alliance UK’s ‘More than you can imagine’ report looked at what the Framework has achieved and what still needs to be done. Now is the time to think about what comes next.
We want to hear from you
We are sharing this survey because we want to know what a future UK policy for rare conditions should look like. What principles should it be built on? What should it prioritise?
We welcome views from everyone with an interest in rare conditions – people affected by rare conditions, carers, family members, people working for support organisations/charities, healthcare professionals, researchers, and policymakers. Everyone’s views are important and will be considered equally.
The survey will ask you to select your role in which you are responding to the survey, as it includes role-specific questions. If you identify with more than one role and each gives you a different perspective on the challenges facing people with rare conditions, we encourage you to complete the survey separately for each role.
We will share our findings with the governments across the UK to help them decide what a future policy should look like.
The survey has 19 questions and takes around X minutes to complete.
The deadline for responses to this survey is Friday 24 April 2026.