Rare Disease Information Survey: We Want Your Feedback!

Hello all!

Can we ask you to take a moment to participate in, or share our survey?

This survey is to help evaluate public awareness of rare diseases, alongside related information and educational resources available for patients, their families, and healthcare professionals in Northern Ireland.

This particular survey is aimed at individual or collaborative groups (this includes a voluntary group, support group, charity etc) and is being conducted as part of the evaluation phase of key priorities for action in the NI Rare Diseases Implementation Plan. Results from this survey will be collated anonymously and used to help improve the accessibility of resources and addressing the needs of individuals affected by rare disease(s) in Northern Ireland. We know many groups have fabulous information resources and are keen to locate existing resources, as well as identify gaps where the development of further resources would be appropriate.

Please do indicate if you are happy to be contacted (which will be addressed in question 4) should there be follow-up questions. We appreciate and welcome your input to this evaluation.

If you wish to provide further details and / or have any questions about this survey, please contact julie.mcmullan@qub.ac.uk using ‘Survey groups’ in the subject line.

It is not essential to answer every question! Complete survey data is most useful to us, but we understand you may not wish to disclose (or have time to complete) some information – please feel free to skip over any such question(s).