Equal stakeholders: how FESCA is preparing patient advocates to reshape scleroderma research 6 July 2026

https://rarerevolutionmagazine.com/equal-stakeholders-how-fesca-is-preparing-patient-advocates-to-reshape-scleroderma-research/ The Federation of European Scleroderma Associations (FESCA) is working to move patient involvement in research from token gesture to genuine partnership. Sue Farrington, president, FESCA and chief executive of Scleroderma and Raynaud’s UK (SRUK), and Ilaria Galetti, vice president of FESCA, share how training, language and structural shifts can turn a patient voice into research that reflects their greatest needs Written by Nicola Miller, RARE Revolution Interview with Sue Farrington, president FESCA, chief executive, Scleroderma and Raynaud’s UK (SRUK) and, and Ilaria Galetti, vice president, FESCA