Rare care matters: The struggle to access diagnosis and care for rare autoimmune rheumatic disease patients (April 2025)

Summary

The Rare Autoimmune Rheumatic Disease Alliance (RAIRDA) has launched a report revealing that individuals living with rare autoimmune rheumatic diseases (RAIRDs) experience stark variations in their care and treatment. 

The report, developed in partnership with Ipsos, draws on survey responses from over 1,300 people across the UK and paints a concerning picture: nearly one in three respondents waited more than five years for a diagnosis, with the average wait time standing at two and a half years. 

Content

Key findings from the report include:

• 86% of those who waited over five years for a diagnosis said it negatively impacted their ability to complete everyday tasks.
• 73% reported a negative effect on their mental health.
• 66% of working individuals said their condition impacted their ability to work effectively.
• Only 16% of respondents felt they had sufficient access to information and support.
• Just 26% had confidence in their GP’s understanding of their condition.

RAIRDA is calling for urgent action. The report sets out a series of practical policy recommendations, including:

• The introduction of clear and measurable targets for timely referrals and treatment.
• A named care coordinator for every person with a RAIRD.
• Increased investment in research to improve diagnostic pathways.