National Conversation on Rare Diseases Survey

At the BPSU's rare disease tea party in July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a ‘national conversation’ on rare disease.

This 'conversation' aims to gather a range of views from across the rare disease community. The views collected from patients, healthcare professionals and industry will be used by Government to inform a rare disease framework that will follow the UK Strategy on Rare Diseases which runs to 2020.

To start the 'conversation', the UK Government have launched a survey to understand the major barriers that those living or working with rare disease face.

We encourage you to make sure your voice is heard by completing this short survey by Friday, 29 November 2019.