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April 30, 2026Lara D. Veeken

P151 Rare AutoImmune SElf-management programme development (RAISE): focus groups to explore needs of underserved populations in the UK

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Authors

SJSadia JanjuaMGMichelle GriffithsJOJen Orme

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Overview

Focus groups reveal challenges faced by underserved populations with rare autoimmune diseases, indicating a need for better resources.

Key Points

  • To explore the needs of underserved populations with rare autoimmune rheumatic diseases (RAIRDs).
  • Conducted six community focus groups in Bristol, Weston-super Mare, and Leeds.
  • Participants identified through NHS clinics and community networks, with posters translated into 14 languages.
  • Data analyzed inductively by an independent health psychologist and researcher.
  • Thirty-nine participants shared insights regarding their experiences with RAIRDs.
  • Identified themes included challenges in navigating the healthcare system and the impact of symptoms on work and finances.
  • Highlighted lack of knowledge among healthcare professionals about rare conditions.

Cite This Study

Janjua et al. (2026) studied this question.

synapsesocial.com/papers/69f2a47b8c0f03fd677638b9https://doi.org/10.1093/rheumatology/keag121.184
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