Future for Rare survey
The 'Future for Rare' survey by Genetic Alliance UK is designed to capture a comprehensive picture of the current experiences and priorities of the genetic, rare and undiagnosed community across the UK.
Around 3.5 million people in the UK are affected by rare conditions, which are individually rare but collectively common. This includes eye conditions such as Behçet’s, Alstrom Syndrome, Bardet-Biedl Syndrome and Stargardt's. For more information and a link to the survey, click here. The closing date for responses is 24th April.
Posted on the 6th of April 2026