Walton, Holly http://orcid.org/0000-0002-8746-059X
Simpson, Amy
Ramsay, Angus I. G.
Hunter, Amy
Jones, Jennifer
Ng, Pei Li
Leeson-Beevers, Kerry
Bloom, Lara
Kai, Joe
Kokocinska, Maria
Sutcliffe, Alastair G.
Morris, Stephen
Fulop, Naomi J.
Funding for this research was provided by:
Health Services and Delivery Research Programme (16/116/82)
Article History
Received: 16 November 2021
Accepted: 30 January 2022
First Online: 14 February 2022
Declarations
:
: This study received ethical approval from the London-Surrey Borders Research Ethics Committee of the Health Research Authority (reference: 19/LO/0250). Participants provided informed consent to participate in this study and for anonymised quotes to be published.
: HW, AIGR, PLN, MK, KLB, LB, AGS, JK, SM and NJF declare they have no competing interests. AS, JJ and AH are employees of Genetic Alliance UK. Genetic Alliance UK runs Rare Disease UK – a campaign for people with rare diseases and all who support them.