National Conversation on Rare Diseases Survey

Do you want to help inform the rare disease framework as part of the UK Strategy for rare diseases in 2020?
If you are a patient, healthcare professional or industry member, you can take part in the ‘National Conversation’ now!

The Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, has launched the ‘national conversation’ on rare diseases which, through the use of a survey, aims to gather the views of patients, carers and healthcare professionals to better understand the barriers faced by those affected by a rare disease. This knowledge will then feed into an overarching framework to follow the UK Strategy on Rare Diseases, which runs until the end of 2020.

If you would like to share your experience, click on the following link for more information and access to the online survey – it only takes 20 mins to complete and is open until 29 November 2019.

https://dhsc-mail.co.uk/form/Sx1iaZDJ/12fe439d08333dcf0e23be36/