Information and Communication Review: Spring 2017


This Survey is part of an Information and Communications Review, which is a Priority Action in the Northern Ireland Implementation Plan for Rare Diseases.” We are keen to learn about your experiences and suggestions for improvement, so hope you are able to complete all or some of this survey. The survey is relatively short (usually takes ~ 15 minutes to complete) and has been designed to allow rapid completion, however there is the option to save partial results and continue the survey later. Partially completed surveys are also welcome - please answer what you can and submit! Answers will be carefully collated and results analysed to identify what works, gaps in information / communication facilities, and priorities for change in Northern Ireland. All results will be stored anonymously and results presented collectively. Thank you for your help! We appreciate your insights, which will help empower individuals and teams affected by rare diseases. If you have any questions, please contact us: