Document is current
Any future updates will be listed below
-
Authors
Jones, Jennifer http://orcid.org/0000-0001-6936-6092
Cruddas, Marie
Simpson, Amy http://orcid.org/0000-0001-7880-4218
Meade, Nick
Pushparajah, Daphnee
Peter, Michelle http://orcid.org/0000-0002-4977-8708
Hunter, Amy http://orcid.org/0000-0001-5076-8761
-
Funding
Funding for this research was provided by:
Alexion Pharmaceuticals
- License Information
-
More Information
Article History
Received: 29 June 2023
Accepted: 5 February 2024
First Online: 19 February 2024
Declarations
:
: Due to the recruitment of respondents to complete a survey via support groups and charities, this work is exempt from the UK National Research Ethics Service and Health Research Authority regulations.Respondents provided consent to participate in the survey reported in this manuscript.
: No individual person’s data are contained within the manuscript.
: NM, AH, JJ and AS are employees (current or previous) of Genetic Alliance UK. Genetic Alliance UK runs Rare Disease UK-a campaign for people with rare diseases and all who support them. DP is an employee of Alexion, Astra Zeneca Rare Disease Unit whose aim is to develop medicines for people with rare diseases and Alexion partly funded the study. MC is a volunteer with the Royal Statistical Society’s Statisticians for Society scheme and declares no competing interests. MP is a Senior Social Scientist at the North Thames Genomic Laboratory Hub and declares no competing interests.
