Members of the Steering Committee of the European Haemophilia Consortium (EHC) regret to inform you that EHC’s serving President, Mr Declan Noone, has resigned.

Mr Noone was elected President in October 2019, months ahead of severe travel and personal movement restrictions imposed to curb the spread of COVID-19. His term was marked by the pandemic and a rapidly evolving treatment landscape with several novel technologies in late clinical development, culminating with the European conditional licensing of two haemophilia gene therapies in late 2022 and early 2023. 

During his term, Mr Noone focused on providing members with accurate and easy-to-digest scientific and medical information, continued data-based advocacy, and focused on underserved patient populations such as women, people with von Willebrand Disease and extremely rare bleeding disorders. 

Mr Noone’s term was planned to end in October 2023, with a scheduled President’s election during the EHC 2023 General Assembly. 

The EHC Steering Committee wishes to thank Mr Noone for his service, guidance, friendship and data-oriented mind, which will forever remain part of his remarkable legacy in the work of the EHC. 

To ensure continuity and progress, the EHC Steering Committee has unanimously appointed Ms Olivia Romero Lux to assume the role of President in an interim caretaking capacity until the end of the current term in October 2023. Ms Manon Degenaar-Dujardin will continue to fulfil her duties as the Vice President of Finance, a position she was elected into in October 2022. This decision has been made with the aim of optimising continuity in the ongoing work of the EHC.

For any additional questions, we kindly invite you to contact Mr Luis Teixeira, EHC CEO.