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, healthcare professionals and industry will be used by government to inform a rare disease framework to improve the lives of people living with rare diseases.
To start the conversation, a survey has been launched to understand the major barriers that those living or working with rare disease face. Please make sure your voice is heard by completing the survey by Friday 29th November 2019. It should take approximately 10-20 minutes to complete and can be accessed at dhsc-mail.co.uk/form/Sx1iaZ...
Dear Paul, I have successfully completed and submitted the survey, best regards, Lily