WORKSHOP 7 - Outcome measures in rare diseases from the concept to the practice: expectations Open discussion

10:20 • WS7_1 • Outcome measures in Rare Skin Diseases: an overview of available tools and challenge > D. Dedee F. MURRELL (Kogarah) 10:38 • WS7_2 • Outcome measures in clinical research: Bullous pemphigoid > P. Pascal JOLY (Rouen) 10:56 • WS7_3 • PROMS in Rare Skin Disease: generic, dermatology-specific and disease-specific tools > M. Maya EL HACHEM (Rome) 11:14 • WS7_4 • PROMS in Rare Diseases: the voice of patients > A. Angelique SAUVESTRE (Lyon) 11:32 • WS7_5 • Towards a common outcome core set for Epidermolysis Bullosa, the COSEB initiative > M. Marieke BOLLING (Groningen)