Funding for this research was provided by:
Medical Research Council
NI Public Health Agency
Received: 4 December 2020
Accepted: 20 April 2021
First Online: 6 May 2021
: This study received ethical approval from Queen’s University Belfast’s Faculty of Medicine, Life and Health Sciences research ethics committee (MHLS 20_72). Consent to take the survey was explicitly given by all rare disease collaborative groups by actively completing the date in a ‘consent box’ before they could proceed with the online survey.
: Not applicable.
: The authors declare they have no competing interests.