Walton, Holly http://orcid.org/0000-0002-8746-059X
Ng, Pei Li http://orcid.org/0000-0001-8411-220X
Simpson, Amy http://orcid.org/0000-0001-7880-4218
Bloom, Lara http://orcid.org/0000-0002-6168-8094
Chitty, Lyn S. http://orcid.org/0000-0002-4857-7138
Fulop, Naomi J. http://orcid.org/0000-0001-5306-6140
Hunter, Amy http://orcid.org/0000-0001-5076-8761
Jones, Jennifer http://orcid.org/0000-0001-6936-6092
Kai, Joe http://orcid.org/0000-0001-9040-9384
Kerecuk, Larissa http://orcid.org/0000-0001-5003-3183
Kokocinska, Maria http://orcid.org/0000-0001-7262-1314
Leeson-Beevers, Kerry http://orcid.org/0000-0001-8826-5086
Parkes, Sharon http://orcid.org/0000-0002-9817-1160
Ramsay, Angus I. G. http://orcid.org/0000-0002-4446-6916
Sutcliffe, Alastair http://orcid.org/0000-0001-8542-6155
Taylor, Christine http://orcid.org/0000-0003-0120-0365
Morris, Stephen http://orcid.org/0000-0002-5828-3563
Funding for this research was provided by:
Health Services and Delivery Research Programme (16/116/82)
Article History
Received: 28 June 2023
Accepted: 25 September 2023
First Online: 23 November 2023
Declarations
:
: This study received ethical approval from UCL Research Ethics Committee (8423/002) and the London-Surrey Borders Research Ethics Committee of the Health Research Authority (19/LO/0250). Participants provided informed consent to participate in the survey reported in this manuscript.
: Not applicable.
: HW, PLN, LSC, NJF, JK, LK, MK, KLB, SP, AIGR, A Sutcliffe, CT, SM authors declare that they have no competing interests. A Simpson, 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.