Rare Diseases Across Europe
PSC Support attended the ERN annual meeting to represent patients on behalf of the EASL Policy and Public Health Committee
Did you know that there is a rare liver disease network across Europe? It’s called the RARE-LIVER ERN and comprises of hospitals working together to improve patient care and rare disease research, and yes, the UK is still part of it!
This week our Chair of Trustees, Martine Walmsley, attended the ERN annual meeting as the patient representative for the EASL Policy and Public Health Committee (the European professional society for hepatology/research).
Martine said, 'For the ERN to be successful, positive, collaborative partnerships between the ERN, patient organisations and professional societies like EASL is essential. The premise of the ERN is to develop patient-centred care and research across Europe for rare liver disease patients, and that means real patient involvement. This week at the ERN meeting I worked with the patient board of the ERN to understand ways EASL can work with patients to support the ERN goals.'