GP’s perception and experience of rare diseases


1. Introduction to survey
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The aim of this project is to gain an understanding of GPs' perceptions and experiences of rare diseases. We will also work with the Northern Ireland Rare Disease Partnership to explore service user (individuals living with a rare disease(s)) perspectives of the GP-patient partnerships. It is hoped that increasing awareness around this issue will in turn improve the care provided for those living with a rare condition.

This survey should take about 15 minutes to complete.

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).

The survey is available in other formats (large print, hard copy, verbal delivery, and different colour contrasts). Please contact if you wish to access these.

Many thanks for your participation; it is much appreciated!


1. By completing this survey, I am confirming that I understand the purpose of the study and give my consent for my responses to be used anonymously for research. *