EASL Policy Dialogues S3 E1: Rarity and parity – Addressing inequities in rare liver disease

Monica Semedo is a Member of the European Parliament from Luxembourg for the Renew Europe Group since 2019. She is Member of the Committee on Employment and Social Affairs and the Committee on Culture and Education and Substitute Member in the Committee of Economic and Monetary Affairs Semedo is Co-Chair of the Disability Intergroup and of the Intergroup on Social Economy. She is Member of the Anti-Racism and Diversity Intergroup (ARDI) and Member of the EU Delegation to the OACPS-EU Joint Parliamentary Assembly. As Cape Verdean descendant, she is very active in promoting diversity and combating racism across Europe and the EU Institutions, and has inclusion and intersectionality as priorities during her mandate, especially for minorities, people with disabilities and youth.

José Willemse is the executive director of the Dutch Liver Patients Association; a member of the management board of the European Reference Network Rare-Liver and a board member of the umbrella organization for liver patients organizations, Liver Patients International. But overall she is a patient advocate pur sang. For her, it is hugely important that patients can keep a grip on their lives through good information and good communication with their healthcare providers. For that, healthcare professionals must know about the patient perspective: what is important for patients to keep a grip on their condition. And that’s her role too: telling the unmet needs of patients to healthcare professionals, whom she admires for their dedication and knowledge.