Alström Syndrome UK is pleased to join Genetic Alliance UK’s Future for Rare Steering Group

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Alström Syndrome UK is pleased to join Genetic Alliance UK’s Future for Rare Steering Group. Together, we are taking a leading role in shaping the future of rare conditions policy in the UK.

The Future for Rare survey is designed to capture a comprehensive picture of the current experiences and priorities of the genetic, rare and undiagnosed community across the UK.

We welcome views from everyone, whether you are living with a genetic, rare and undiagnosed condition, caring for a loved one, or working for a support organisation, as a researcher or a healthcare professional. Every perspective is valued equally and will directly inform our recommendations to all four governments.

Share your experiences via the Future for Rare survey.

Please submit your response by Friday 24 April 2026.

For more information on how this information will inform the campaign, please visit the Future for Rare webpage.