Augustas Nedzinskas is a patient with haemophilia A and a long-standing volunteer in the bleeding disorders community in Lithuania and internationally. He proudly served on the board of the Lithuania Hemophilia Association for over a decade, where he’s been involved in organising events, activities and advocacy efforts, and building a caring community.

Augustas also volunteered as a patient expert for the World Federation of Hemophilia’s project on the update of the guidelines for the management of haemophilia. This experience allowed him to contribute to the global conversation on haemophilia care, ensuring that patient perspectives are at the forefront of treatment recommendations.

Professionally, Augustas holds a degree in software engineering and work as an engineering manager. He speaks Lithuanian and English, and has a limited proficiency in French and Russian.

Olivia joined the EHC team in April 2024 after serving the EHC community as a volunteer for many years and in different roles: Steering Committee member and interim President.

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 its establishment. She was co-opted to join the EHC Steering Committee again in January 2023. In July 2023, the EHC Steering Committee unanimously appointed  Olivia Romero Lux 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.

With a proven track record of dedication and experience, Olivia brings a wealth of expertise and leadership to our organisation. Her commitment to the current vision and strategic objectives as well as her innovative and balanced approach to challenges will guide EHC through our next phase of growth and development.

Stefan joined the EHC Staff in December 2024 as Patient Engagement and Community Lead, after being involved as a volunteer in bleeding disorder patient organisations in Serbia and internationally for many years. He has severe haemophilia A, and holds a Bachelor’s degree in law.

His greatest passion is patient advocacy, and he has been especially passionate about improving youth engagement within the bleeding disorders community. Hence, Stefan was the President of the Youth Committee of the Serbian Haemophilia Society and a member of the EHC Youth Committee between 2018 and 2024.

In 2020, he was also co-opted as EHC Steering Committee Member, a role in which he served until the new elections in October 2024. Stefan strives to continue improving the lives of those affected by bleeding disorders through cooperation with the entire community.

Stefan’s main responsibilities at the EHC include overseeing the European Rare and Inhibitor Network (ERIN) and the Youth Committee, managing key activities and events, such as the EHC Leadership Conference, Youth Leadership Workshop, Youth Alumni Event, and ERIN Summit. He is also responsible for the Youth Fellowship Programme and serves as a liaison for some selected NMOs.