Funding for this research was provided by:
Health Services and Delivery Research Programme (16/116/82)
Received: 9 July 2020
Accepted: 22 December 2020
First Online: 10 February 2021
: The research was approved by University College London’s research ethics committee (project ID 8423/002).
: Informed consent (including consent for the use of anonymised quotes in publications) was obtained by all participants prior to interview.
: AS and AH are Senior Researcher and Director of Research, respectively, at the patient group, Genetic Alliance UK, which is a national charity working to improve the lives of patients and families affected by all types of genetic conditions. Genetic Alliance UK runs Rare Disease UK—a campaign for people with rare diseases and all who support them.