Miguel Crato has been a member of the EHC Steering Committee since his election in 2016 and re-election in 2020. In October 2023 at the General Assembly of the EHC Miguel was elected as the new EHC President. 

Miguel has also been a member of the EHC Inhibitor Working Group (IWG) since its establishment in 2015. In 2022, Miguel became a committee member of the groundbreaking European Rare and Inhibitors Network (ERIN). The ERIN project aims to foster best practices in treating and caring for those with extremely rare conditions, and enforce and help our National Member Organisations (NMO) with the differentiated tools to advocate for equality and equity within this underserved community. 

Over the years, Miguel has served as both a chair and speaker in various EHC events since 2014. Currently, he represents the organisation in the EAHAD Gene Therapy Working Group and the EAHAD Centre Certification Panel, showcasing his commitment to advancing cutting-edge treatments and certifications in bleeding disorders. Miguel also represented EHC as an expert in several European Medicines Agency (EMA) expert meetings. 

Prior to his involvement at the European level, Miguel served as the President of the Associação Portuguesa de Hemofilia e de outras Coagulopatias Congénitas, the Portuguese NMO, from 2012 to 2020. His leadership at the national level also extended to being a member of the Portuguese National Haemophilia Commission and representing his NMO as an expert in the INFARMED (the HTA body in Portugal).

In addition to his extensive involvement in various committees and working groups, Miguel is currently a member of the WFH Bylaws Committee, further revealing his dedication to advancing the global bleeding disorders community.

Miguel has severe haemophilia A with inhibitors and mild factor VII deficiency. As a patient representative and community member, he has consistently prioritised empowering NMOs with the necessary tools to take an active role in shaping bleeding disorder treatment and care in their respective countries. He strives to support NMO members in achieving self-determination, fostering scientific knowledge, and adopting a positive approach towards managing their conditions.

Outside of his advocacy and community work, Miguel is a professional legal adviser and a jurist, a testament to his determination to make a difference personally and professionally.

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 Willebrant Disease” project supported by the WHF.

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.

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. 

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.

Amy Owen-Wyard is a Registered Mental Health Nurse with extensive experience supporting children, young people, and adults facing severe mental health challenges. She has contributed to service improvements in holistic care for patients in general hospitals, enhancing mental and physical health integration within multidisciplinary teams.

As an advocate for rare bleeding disorders, Amy’s journey began when her son, Logan, was diagnosed with Glanzmann Thrombasthenia at seven weeks old. Inspired by her experiences, she became a trustee for the UK Haemophilia Society in November 2021, bringing a unique perspective to the board. As a part of this role, earlier this year she created the UKs rare and BDUC working group representing a wide range of extremely rare bleeding disorders.

Amy actively supports the rare bleeding disorder community through her roles on the steering committees for Haemnet’s Glanzmann’s 360 study, patient representative on EAHAD Glanzmann’s working group and the European Haemophilia Consortium’s new European Rare & Inhibitor Network (ERIN), leveraging her mental health expertise within the healthcare sector.

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.

As a person with severe haemophilia A based in the United Kingdom, Jamie O’Hara is a member of the UK Haemophilia Society. Married and father of two, his daughter is a symptomatic carrier.

Jamie is an industry economist by background, with expertise in practical and technical applications of the discipline across industries. During his career, he has also issued many publications (in excess of 100) in the health economics of haemophilia. He is currently a Senior Lecturer of Health Economics at the University of Chester.

Jamie has worked with various organisations across public, private and third sectors, including the European Commission and the European Union, and numerous charitable organisations.

During his free time, Jamie enjoys cycling and socialising.

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.

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.