The UK Rare Disease Framework is a key document which aims to improve the lives of people affected by rare conditions.
Alex TLC has been working closely with Genetic Alliance as part of their Future for Rare campaign to inform what future UK rare disease policy should look like when the current framework ends in January 2027.
In June, our CEO and founder, Sara, was invited to join one of 11 working groups (Diagnosis) in a community workshop to inform the campaign. These groups brought together people with lived experience, support organisations, clinicians, researchers and other experts to develop practical and realistic policy options.
