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Explore the significant impact of relapsing polychondritis (RP) on patient quality of life through this 36-minute webinar presented by ERN ReCONNET. Learn about groundbreaking research addressing the complete absence of quality of life data for this rare autoimmune disease, as the RP working group develops the first disease-specific health-related quality of life measure called RP-QoL. Discover comprehensive survey results from 274 RP patients across 22 countries that reveal the global burden of this condition and identify the primary quality of life domains affected by the disease. Gain insights into the ReCONNET CROSSADAPT methodology used to assess disease impact and understand how these findings will inform the development of targeted quality of life assessment tools. Examine detailed data on disease burden while exploring the main areas where RP affects patients' daily lives, relationships, and overall well-being. Benefit from expert presentations by Prof. Laurent Arnaud from Hôpitaux Universitaires de Strasbourg and Dr. Philippe Mertz from Tenon Hospital Paris, both leading specialists in autoimmune and autoinflammatory diseases, with moderation by patient advocates Lisa Matthews and Camelia Bucsa from Relapsing Polychondritis Awareness & Support. Understand how this research represents a crucial milestone in improving care for RP patients and advancing the field's understanding of this rare condition's comprehensive impact on human life.
