Biography

Olivia Romero Lux is French and Spanish. After several years in the United States where her severe haemophilia daughter was born, she came back to France in 2000 and joined the French Haemophilia Society where she was active until the end of 2022, providing support to new families diagnosed with rare bleeding disorders, collaborating to the French 2012 and 2024 WFH Congress bids, being elected at the National Board, leading International Affairs and the Burkina Faso/France NMO Twinning programme, among others.

Focused on equal treatment access for all, youth education and NMO capacity building, Olivia was elected to the Steering Committee of the EHC from 2013 until 2020 and has been the EHC Youth Advisor since then. She was co-opted to join the EHC Steering Committee again in January 2023. In July 2023, the EHC Steering Committee unanimously appointed Olivia to assume the role of President in an interim caretaking capacity until the end of the term in October 2023 after the resignation of Declan Noone. Olivia joined the EHC team as the CEO in April 2024.