Shape rare disease policy in the UK!

Apr 13, 2026

What does the future policy for rare conditions need to address?

Share your input on what a future UK policy for rare conditions should look like now by taking (and sharing!) the Future for Rare survey!

Survey closes: Friday, 24 April 2026

Take survey

Get involved in Future for Rare

Take the 19-question Future of Rare survey now to inform decisions about what a future policy for rare diseases needs to address.

Help Genetic Alliance UK build a comprehensive picture of the experiences and unmet needs of those affected by rare conditions across the UK, ensuring your challenges and priorities directly shape their recommendations to government.

Who can take the survey?

Everyone with an interest in rare conditions can take the survey!

People affected by rare conditions, carers, family members, people working for support organisations/charities, healthcare professionals, researchers and policymakers.

Genetic Alliance UK also wants to hear about the work you and others in your communities have already done.

They encourage charities, researchers and partners to share reports, policy recommendations or findings relevant to the future of rare conditions care.

Please email your evidence to futureforrare@geneticalliance.org.uk by Friday 24 April 2026.

Take survey to shape rare policy

Thank you for sharing your insights to actively shape UK rare disease policy!

Visit the official Future for Rare webpage to learn the next steps once the survey closes and remember to stay involved so the new policy works for you.

Learn next steps after survey

Background

How we got here

Since 2021, the UK Rare Diseases Framework has been the UK-wide policy aimed at improving the lives of those affected by rare diseases, structured with four priorities and five underpinning themes.

In November 2025, Minister Dalton from the Department of Health and Social Care, who is responsible for rare diseases, announced that the existing framework will be extended by one year across all four home nations, ending the uncertainty regarding rare disease policy in the UK.

Minister Dalton has requested that the four nations submit their proposals for the future of rare disease policy by autumn 2026.

You can learn more about this announcement here and about the UK Rare Diseases Framework on our Resources Hub here.

What is the Future for Rare campaign?

The Future for Rare campaign aims to inform what the future of rare disease policy in the UK should look like by asking the rare community for their input.

This campaign is coordinated by Genetic Alliance UK in collaboration with the multi-stakeholder Future for Rare Steering Group, which is comprised of lived-experience representatives, charity leaders, research and industry experts who will ensure the process remains inclusive, transparent and focused on delivering high-quality evidence to the government.

Beacon is proud to be involved in this pivotal steering group.