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 the rare disease community. The views collected from patients, families and carers, healthcare professionals (including GPs, specialist rare disease clinicians, clinical academics) and industry will be used by government to inform a rare disease framework to improve the lives of people living with rare diseases. This will follow on from the current UK Rare Diseases Strategy which expires at the end of 2020.
To start the conversation, a survey has been launched to understand the major barriers that healthcare professionals working with rare diseases face. Make sure your voice is heard by completing this short survey by Friday 29th November 2019.