The Department of Health and Social Care has begun its ‘national conversation’ on rare diseases by developing surveys to understand the main barriers facing the community.
In July 2019 Baroness Blackwood, Parliamentary Under Secretary of State, announced the project aiming to find common themes to feed into an overarching framework.
This framework follows the UK Strategy on Rare Diseases which expires at the end of 2020.
The survey, which was developed with help from stakeholders, asks respondents for their background in the rare disease community and what they think are the greatest challenges faced by those living with, caring for, or developing treatments for rare diseases.
The deadline for responses is Friday 29th November. The survey can be found here.