Quality of Life in Relapsing Polychondritis: Why It Matters

Understanding how Relapsing Polychondritis (RP) affects daily life has historically been a missing piece in research. To address this gap, ERN ReCONNET hosted an important educational webinar focusing specifically on quality of life in RP.

The webinar shared findings from an international survey involving 274 people living with RP across 22 countries, highlighting the real-world burden of the disease and the areas of life most affected. These insights are playing a key role in shaping the development of the first disease-specific RP Quality of Life tool (RP-QoL), designed to better capture the lived experience of RP patients.

The session featured expert insights from Professor Laurent Arnaud (Hôpitaux Universitaires de Strasbourg, France) and Dr Philippe Mertz (Tenon Hospital, Paris, France), both internationally recognised specialists in RP and autoimmune disease.

The webinar was moderated by ePAG representatives Lisa Matthews (UK) and Camelia Bucsa (Romania), ensuring the patient voice remained central throughout the discussion.

This work represents an important milestone for RP research, helping to improve understanding of the disease and supporting the development of better research tools, clinical care, and future treatments.

Watch the full webinar here.