Mother of four children, including one with severe haemophilia A, Tatjana Markovic is a carrier without bleeding episodes. She’s been volunteering at the Serbian Hemophilia Society (Udruženje hemofiličara Srbije) for over 20 years, working with mothers, sisters and daughters of patients with haemophilia, many of who are carriers, as well as with women with Von Willebrand Disease.

As a regular participant in the trainings organised by the EHC and WFH for the Serbian Hemophilia Society, their Serbian NMO, Tatjana gained excellent skills for the management of patient societies. She has been a member of the EHC Women and Bleeding Disorders (WBD) Committee since 2017.

In the South of Serbia, where she lives, Tatjana actively cooperates as a volunteer with other organisations of people with special needs – including associations of persons with paraplegia, persons with dystrophy, and cancer patients, among others. She’s fostering the collaboration with the Association of Volunteers of the Clinical Center of Niš, which has always supported the Serbian Hemophilia Society in the organisation of events and workshops.

Tatjana is also a member of the PR team of the Serbian Hemophilia Society, which is responsible for raising awareness about haemophilia. As a coordinator, she participated in the “Building awareness of psychosocial aspects of haemophilia” project, the WFH Global Alliance for Progress (GAP) Program, and the “Women, gynecology and von Willebrand Disease” project supported by the WFH.

William McKeown is a patient with severe haemophilia A from Northern Ireland. William is the Vice-Chairman of Haemophilia NI, Patient Ambassador for the UK Haemophilia Society and a former member of the EHC Youth Committee.

William is a doctor who specialises as a Consultant Geriatrician and Stroke Physician at Antrim Area Hospital in Northern Ireland, and holds a Masters Degree in Medical Education. He has a particular passion for promoting successful ageing for people with bleeding disorders, as he has previously presented on this topic at the EHC and WFH. 

Laura Quintas Lorenzo is an advocate for patients with coagulopathies with Von Willebrand Disease type 3. She has been involved in her reference haemophilia organization in the region (Galician haemophilia association) in Spain, from a very early age, and has been an active member of its steering committee since 2004 and is currently its vice-president. She also actively participates in her NMO Fedhemo (Spanish Haemophilia Federation) and is currently the vice-president.

During all this time she has worked to give visibility to haemorrhagic problems in women and girls, and especially in VWD and other coagulopathies. She was the driving force behind the Fedhemo women’s committee created in 2019, where women with different coagulopathies work to make coagulopathies visible in girls and women and to raise awareness in society so that they can obtain an appropriate diagnosis and treatment. She actively participates in different committees and working groups with the health administration in her region, being the voice of the patients.

Outside of her community advocacy work, Laura Quintas participates in the organisation of people with disabilities in Galicia (Cogami) that works for the defence of people with physical and organic disabilities, which allows her an additional space for the defence of the rights of people with coagulopathies. She also participates as an ambassador of the EvW for Fedhemo in the European Haemophilia Consortium (EHC), becoming part of the EvW Committee in the period 2024-2026. She is also a member of the EAHAD (European Association of Haemophilia and Related Disorders) Women and Girls with Bleeding Disorders Working Group on behalf of the EHC.

Panagiotis (Panos) Christoforou, originating from Cyprus, is a Cypriot Greek with a profound commitment to the field of haematology. Born in Paphos, Cyprus, Panos encountered the challenges of severe Haemophilia A during his formative years. After an initial period of struggle without a diagnosis, he sought medical assistance in London, UK, where he was finally informed of his condition and initiated prophylactic treatment.

Motivated by the firsthand experience of witnessing the difficulties faced by both himself and his family in dealing with the diagnosis and the associated psychological burdens, Panos resolved to dedicate his professional endeavours to the field of medicine. He has become a haematologist, driven by a vision to transform the landscape of haemophilia and rare bleeding disorders, advocating for equitable treatment and universal access to care. His overarching goal is to institute a comprehensive, multidisciplinary approach that encompasses both patients and their caregivers.

Panos’s commitment to advancing the cause of haemophilia extends beyond his clinical pursuits. He currently serves as a member of the Youth Leadership Advisory Committee for the term 2022-2024 of the World Federation of Haemophilia (WFH). 

Furthermore, his dedication is reflected in his longstanding association with his Greek National Member Organisation (NMO) since 2016. Elected to the board for the term 2021-2023, he played a pivotal role in establishing the Youth Group, focusing on promoting physical exercise and overall well-being among patients with haemophilia. This initiative is emblematic of his passion for nature and mountaineering.

In essence, Panos exemplifies a commendable fusion of personal experience and professional commitment, contributing significantly to the advancement and well-being of individuals affected by bleeding disorders.

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.

Marius Tanase holds a Bachelor’s degree in International Economics, and he’s been part of the Romanian bleeding disorders community for many years as a person with severe haemophilia A.

Marius is a long-standing volunteer for the Asociația Română de Hemofilie (ARH), the EHC Romanian NMO.

Brina Zaman is a board member of the Slovenian Haemophilia Society and has been serving as a member of the Women and Bleeding Disorders (WBD) Committee since June 2024. As a carrier of Haemophilia A and the mother of a son living with moderate Haemophilia A, she brings a powerful personal perspective to her advocacy work. Brina is highly engaged in raising awareness, supporting families, and improving care for people with bleeding disorders in Slovenia. Her work is driven by a strong commitment to patient empowerment, education, and the advancement of gender-sensitive approaches within the bleeding disorders community.

Samuel Compagnin began his engagement with the EHC in April 2024 by attending the Youth Leadership Workshop in Brussels. At his first EHC Annual Conference in 2024, he participated in the Youth Debate and subsequently played a key role in securing Italy as the host country for the 2027 Conference.

As a patient with Haemophilia A, Samuel has been actively involved with ABGEC, his local patient association based in Padua, Italy, serving as vice-president since 2022. That same year, he also joined the Youth Committee of FedEmo, the Italian EHC National Member Organisation. At ABGEC, he works alongside fellow board members to build a strong, united community that organises impactful events and projects with the potential to inspire others.

Samuel is an aerospace engineer currently completing his master’s thesis in mechanical and structural engineering with an amusement company, specialising in roller coaster design.

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.