After 10 impactful years at the EHC, Amanda Bok has left the position of CEO.

Since her arrival in 2012 at the EHC, Amanda has left an incredible legacy. She helped the organization grow from one staff member to an amazingly skilled team of ten. Under Brian O’Mahony’s presidency, she managed to build up a structure able to face the needs of our members and advocate at the European level for better access to treatment for all. After Declan Noone’s election in 2019, and despite new challenges, she helped adjust to the COVID pandemic, assisting the staff and EHC members in a constantly evolving world.

She had a great ability to build strong relationships with European institutions, partners, and industry, which solidified EHC’s reputation and recognition. Thanks to her commitment, EHC is now considered a solid and impactful institution among policy and decision-makers, as well as a role model for the rare disease community.

With a very humane and caring approach, Amanda was also committed to supporting traditionally underserved parts of the community. Her efforts to support people with inhibitors, women, people with von Willebrand and extremely rare bleeding disorders, as well as youth were truly inspiring and have definitely been a game changer for all those concerned in our community.

Additionally, Amanda was a strong advocate for good governance. Her policies on funding, expenses, conflicts of interest, and codes of conduct created a strong foundation for the organisation. Transparency, equity, fair representation, and respect for privacy were never taken lightly.

Her great professionalism, her undeniable human qualities, her sense of duty and her commitment to our members and our external partners have enabled the EHC to rank among the greatest European institutions serving patients.

EHC’s Steering Committee is very grateful for Amanda’s incredible work and wishes her all the best in her future endeavours. We also would like to thank her husband and two children for their support during all those years.

Thank you, Amanda, for your lasting contribution to the community!

President and The Steering Committee