Researchers at Queen’s University Belfast and University of Aberdeen are conducting an online international survey to gain an understanding of the impact COVID-19 is having on people with a rare disease and their caregivers.  

Results from this survey will be collated anonymously and the researchers hope to provide rapid feedback to clinicians and Unique about the current needs expressed by patients and caregivers.

If you have any questions please do not hesitate to get in touch at Julie.mcmullan@qub.ac.uk or visit