Rare Disease Information Hub: We Need Your Views

It has been identified through recent research that there is a need for the development of a website or “information hub” where rare disease information can be accessed or linked in an accessible format.

We are keen to improve information sharing and communication for rare diseases in Northern Ireland, however,  as resources are limited, we are now keen to seek your views on which components should be developed first as we may need to develop items specifically tailored for Northern Ireland or signpost individuals to appropriate resources that exist elsewhere.

We would really value your input and as such would be very grateful if you would take the time to consider completing an online survey here:


Results from this survey will be collated anonymously and used to help develop resources for individuals affected by rare disease(s) in Northern Ireland.

Please do indicate if you are happy to be contacted should there be follow-up questions. No identifiable information will be used without your explicit consent in a follow-up conversation.

If you have any questions or wish to provide further details please do not hesitate to get in touch via email: Julie.mcmullan@qub.ac.uk.

Thank you for your help with this research and for considering participating in this project.