As part of the NI rare disease action plan, Queen’s University Belfast, Ulster University, and the NI Public Health Agency are seeking views of people living with rare diseases - patients, carers, and family members, about their experience of research. This includes:  

People who have taken part in research 

People who would like to take part, but haven't had the opportunity to do so yet 

People who are not interested / find barriers to taking part in research  

The survey is for both people with a rare disease and others affected – such as carers or family members and is completely anonymous. Representatives of Queen’s University Belfast and Ulster University will help with analysis of the results and report-writing. 

The survey is available online at  

For further information about the survey or if you would like to share your story of involvement in research, please contact 

Share this article: