Factors affecting overall care experience for people living with rare conditions in the UK: exploratory analysis of a quantitative patient experience survey.

"Declarations Ethics approval and consent to participateDue 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. Consent for publicationNo individual person’s data are contained within the manuscript. Competing interestsNM, 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. Competing interests 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."

"Funding This work was supported by Alexion, Astra Zeneca Rare Disease Unit. The views expressed are those of the author(s) and not necessarily those of the organisations they work for."