Improvements needed to support people living and working with a rare disease in Northern Ireland: current rare disease support perceived as inadequate.

ABSTRACT:

Background

Many people living and working with rare diseases describe consistent difficulties accessing appropriate information and support. In this study an evaluation of the awareness of rare diseases, alongside related information and educational resources available for patients, their families and healthcare professionals, was conducted in 2018-2019 using an online survey and semi-structured interviews with rare disease collaborative groups (charities, voluntary and community groups) active across Northern Ireland (NI).

Methods

This study had 2 stages. Stage 1 was an online survey and stage 2 involved semi-structured interviews both with rare disease collaborative groups in Northern Ireland. The surveys and interviews were used to locate existing resources as well as ide

SUBMITTER: McMullan J 

PROVIDER: S-EPMC7649905 | biostudies-literature | 2020 Nov

REPOSITORIES: biostudies-literature