COSEB (Core Outcome Sets for Epidermolysis Bullosa) is reaching out to request your support in recruiting patients and caregivers for an international interview study on outcomes that matter to people living with EB. Your network is essential to reaching participants from across the globe, to ensure patient-focused drug development and clinical trials in EB.

The COSEB team will be conducting semi-structured, one-on-one video interviews with patients and caregivers to capture what aspects of their disease matter most to them. Interviews take approximately 30-45minutes via video call. Participation is entirely voluntary.

The aim is to recruit 90 participants in total:
• 15 patients aged 16+ per major EB type (EBS, JEB, DEB)
• 15 caregivers of children under 16 per major EB type
• Participants from all continents, ideally representing global diversity
• English-speaking
• Internet-connection

Please share the attached flyer (including QR code) with eligible patients and caregivers in your network.