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.
The UK Rare Diseases Framework is the current UK-wide policy for people with rare conditions. This policy is due to end in January 2027.
This survey is specifically looking for responses to inform decisions about what a future policy for rare conditions needs to address.
We want to hear from you
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.
The survey has 19 questions and takes around 15 minutes to complete.
Please share your contact details at the end of the survey if you would like to hear more about this work.
The deadline for responses to this survey is Friday 24 April 2026.
Thank you for taking the time to share your views.
