National Conversation on Rare Disease

Get involved

Baroness Blackwood, the Minister for Rare Disease at the Department of Health and Social Care (DHSC) issued a statement  in July to start a national conversation on rare diseases. A copy of the statement in July can be viewed here

The Northern Ireland Rare Disease Partnership (NIRDP), working with researchers from Queen’s University Belfast will carry out a survey focusing on carers of people with a rare disease.

These views will be used to help shape future local and national rare disease frameworks when the current strategies and plans expire.

For more information on the survey, please visit:

Project overview

This project will explore challenges carers face when looking after someone with a rare disease and identify how they could be better supported in this role. Please share the survey link as widely as possible within your networks, so that as many people as possible who care for those living with a rare disease in NI can have their voice heard.

Commitment required

Respond to information and Formal consultation


For further information and to complete the survey, please go to:



Register your interest

Fill in the survey at this link: