Rare Disease Information from Groups

1. Introduction to survey

This short survey is for individual or collaborative groups (this includes a voluntary group, support group, charity etc) to help evaluate the impact of COVID-19 on groups who are supporting people with rare diseases during the 2020 pandemic.  To be eligible to participate you must be over 18 years old and be part of a rare disease support group (either in an employed or voluntary basis).  The role of the charity / volunteer sector is recognised as being critically important in our society, particularly in helping minimise challenges associated with the COVID-19 pandemic. 

There will be a £50 Amazon voucher provided to a single entry drawn at random from individuals who wish to be entered into the draw by providing their email address in the last question.

The information leaflet and data protection information associated with this survey are available to read here

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 are keen to identify strategies that are working well for these groups as well as common issues to explore where the development of further resources would be most effective during this COVID-19 pandemic.

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 raredisease@qub.ac.uk using ‘COVID-19 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).

Many thanks for your participation; it is much appreciated!

I confirm that I have read, or had read to me, and understand the information sheet dated 26/06/20, version 3 for the above study. I have had the opportunity to email any queries and have had these answered fully.

I understand that my participation is voluntary and I am free to withdraw by closing the browser. However, once submitted my information cannot be withdrawn as it is anonymised.

I understand the study is being conducted by researchers from Queen’s University Belfast and that my personal information will be held securely on University premises and handled in accordance with the provisions of the Data Protection Act 2018.

I understand that data collected as part of this study may be looked at by authorized individuals from Queen’s University Belfast where it is relevant to my taking part in this research. I give permission for these individuals to have access to this information.
I agree to take part in the above study.


1. Please enter today's date in DD/MM/YYY format to provide your explicit consent to continue with this survey. *