The Rare Disease Team at Queen’s University Belfast have launched a COVID-19 survey which can be accessed at the following link:
https://www.smartsurvey.co.uk/s/COVID19_RD_Groups/
They are interested in hearing the views of how the pandemic has impacted groups supporting those with a rare disease.
Results of this survey will be used to help improve the accessibility of resources and address the needs of individuals affected by rare disease(s) in Northern Ireland. A £50 Amazon voucher will be provided to a single entry drawn at random. A participant information sheet can be found here providing more details about the study as well as a privacy notice here explaining how your data will be used. If you have any questions about the survey, please contact raredisease@qub.ac.uk using ‘COVID-19 Survey groups’ in the subject line.