People living with rare diseases in Northern Ireland: Survey regarding experiences of participating in research

Location: Regional

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

PPI team, Gransha Park House,
Clooney Road, Derry/Londonderry,BT47 6FN.