National conversation on rare diseases

The Minister for rare disease at the Department of Health and Social Care, Baroness Blackwood, recently announced a national conversation to understand how we can better care for people living with rare disease.

This survey aims to identify the major challenges faced by rare disease patients and the people and organisations that care for them. The themes identified in the survey will feed into a framework to follow the current UK Strategy on Rare Diseases, which runs until the end of 2020.

The survey is seeking input from the rare disease community across the UK, including patients, families and carers, rare disease medical professionals and GPs, clinical academics and industry experts.

You must be living currently in the UK and over 16 years to take part in the survey. If you are under 16 years and are living with a rare disease, please ask a family member or carer to fill in the survey for you.  For further information see below.

The deadline for responses is Friday 29 November 2019.

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