National conversation on rare diseases

Baroness Nicola Blackwood, Minister for rare diseases at the Department of Health and Social Care invites people to join in the conversation about rare diseases
The Department of Health and Social Care (DHSC) have now launched a survey as part of the ‘national conversation’ on rare diseases.
The survey looks to capture the key challenges facing the rare disease community across the UK, including patients, families and carers, rare disease medical professionals and GPs, clinical academics and industry experts. Both members and corporate supports are welcome to respond. Take part in the survey here
The responses will be used to identify key themes for the overarching framework for rare diseases which the Department is developing to follow the UK Strategy on Rare Diseases. Although DHSC has not confirm the other aspects of the ‘national conversation’ on rare diseases, respondents will be able to provide their contact details as part of the survey if they are interested in participating in further engagement.
The survey is now open and will be available until 29 November 2019.


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