New Research: Relapsing Polychondritis Quality of Life Instrument Published

We are delighted to share the publication of a piece of research co-authored by Lisa Matthews, Trustee and ePAG Patient Representative for Relapsing Polychondritis Awareness & Support.

Development and validation of a relapsing polychondritis disease-specific quality of life instrument (ERN ReCONNET RP-QoL)

This major project, undertaken through ERN ReCONNET, brought together leading RP specialists including Prof. Arnaud and Dr. Marcela Ferrada, alongside patient representatives Camelia Denisa Bucsa and Lisa Matthews. It is the first quality of life instrument developed specifically for Relapsing Polychondritis patients - a significant milestone for the RP community.

This achievement would not have been possible without the incredible support of our

patient community, who completed surveys, tested the instrument and provided invaluable feedback. Thank you to every single one of you.

It is hoped that this instrument will become a valuable tool for the future, helping clinicians better understand and measure the real impact of RP on patients' lives.

🔗 Read the full article here.