Relapsing Polychondritis (RP) is a rare, progressive condition characterised by recurrent episodes of inflammation of cartilaginous structures. These include the ears, nose, upper respiratory tract, chest wall and joints.
As part of Rare Disease Month, ERN ReCONNET and the JARDIN Joint Action are sharing real patient experiences from across Europe. We are pleased to highlight Lotta, a member of the Relapsing Polychondritis community, who shares her journey to diagnosis and what daily life with RP can look like. Her story highlights the challenges of rare disease diagnosis and the importance of specialist care and international collaboration. You can read Lotta’s story here. By sharing experien
The international RP-QoL study, developed through ERN ReCONNET, has entered its final validation phase. This landmark project is creating the first quality-of-life tool designed specifically for people living with Relapsing Polychondritis. If you have a confirmed RP diagnosis, your participation can help shape future research, treatment evaluation and care.
Quality of Life in Relapsing Polychondritis
ERN ReCONNET has released an important webinar exploring how RP affects daily life, based on data from 274 patients across 22 countries. The findings are helping shape the first RP-specific quality of life tool and improve future research and care.
