In January 2025, Martine Walmsley, PSC Support Head of Research Strategy, represented patients with rare liver diseases at the ERN RARE-LIVER annual meeting.

The ERN RARE-LIVER is a network that brings together leading experts and patient organisations to:

🏥 build healthcare capacity through education and training
🧑‍⚕️🙋👨🏽‍🔬 provide expert medical consultations via a virtual network
📊 🔎 develop and use the R-LIVER registry, an important research tool.

The PSC Working group is doing important work, co-led by Martine, Nora Cazzagon (Hepatologist from Padua, Italy), Norman Junge (paediatric hepatologost from Hannover, Germany.

Initiatives include:

• education for doctors caring for adolescents transferring to adult PSC services,
• age-appropriate PSC information just for children and young adults,
• supporting an international workshop to help focus and align of global quality of life research in PSC,
• expansion of the ERN patient registry to help improve PSC-IBD care
• an online interactive tool to help patients understand PSC and navigate their care.