Have your say about improving care and support for people living with rare conditions

1 min read

Monday 13 April 2026

The Genetic Alliance UK has launched a new campaign called “Future for Rare.” The campaign aims to bring together people affected by rare conditions, as well as carers, charities, healthcare groups, and experts, to share their views on the next UK Rare Diseases Framework.

The UK Rare Diseases Framework is the UK-wide policy that aims to improve the lives of people affected by rare conditions. It is due to be updated in 2027. The UK government has asked all four nations to come up with ideas for what will help shape future policy.

As part of this, you are invited to complete a short 15-minute survey.

The deadline to take part is Friday 24 April.

The campaign is designed to make sure that future plans reflect the real experiences and needs of people living with rare conditions.

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