Unique is happy to share the new UK Rare Diseases Framework that was published on Saturday (9th January 2021). Many Unique members, alongside other members of the rare disease community, contributed their views and experiences to the National Conversation on Rare Disease survey, which was launched in October 2019 by Baroness Nicola Blackwood to identify the challenges faced by the rare disease community. The survey received a fantastic 6,293 responses from the community!
Using the results from the survey, an Editorial Board of policy officials, representatives from clinical practice and patient organisations formally identified and refined priorities and underpinning themes for the new framework. These ideas were further tested through stakeholder engagement with patient organisations, clinicians, researchers and industry representatives and were put to the DHSC’s UK Rare Disease Policy Board, of which Unique CEO Dr Beverly Searle is a member, and the Rare Diseases Advisory Group for discussion. Four key priorities and five underpinning themes were agreed to address the health inequalities, improve the quality and availability of care, and improve the lives of people living with rare diseases.
See the UK Rare Diseases Framework here: https://www.gov.uk/government/publications/uk-rare-diseases-framework