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Authors
Simpson, Amy http://orcid.org/0000-0001-7880-4218
Bloom, Lara
Fulop, Naomi J. http://orcid.org/0000-0001-5306-6140
Hudson, Emma
Leeson-Beevers, Kerry
Morris, Stephen
Ramsay, Angus I. G.
Sutcliffe, Alastair G.
Walton, Holly http://orcid.org/0000-0002-8746-059X
Hunter, Amy
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Funding
Funding for this research was provided by:
Health Services and Delivery Research Programme (16/116/82)
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Article History
Received: 9 July 2020
Accepted: 22 December 2020
First Online: 10 February 2021
Ethics approval
: 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.
