The results of our 2020 survey to understand the experience of people living with rare conditions in the UK

Rare Experience 2020

Genetic Alliance UK’s report paints a detailed and vivid picture of wide range and variety of experiences of people living with rare conditions in the UK. It is structured to match our expected themes of the incoming UK Framework for rare conditions, and includes recommendations and learning points for the future of rare disease policy in the UK.

Reforming Rare Diseases

Alexion’s report was developed to outline the current perspectives and experiences of care from the patient and rare disease community to reflect the impact of the 2013 UK Strategy for Rare Diseases and provide insight and recommendations for the implementation of the anticipated new Rare Disease Framework.