Volunteer, Kyrgyz Hemophilia Society

Kirguistánn

Aizat Aidarbekova is a young mom of a 10-year-old boy with hemophilia with severe inhibitors. She has been involved with the hemophilia Society in Kyrgyzstan for the past 9 years, and since 2019 has been working as a volunteer at the international level, including working as an ambassador at the EHC Youth Committee, as well as with the WFH youth twinning program between Italy and Kyrgyzstan. She currently sits on the WFH Women and Girls with Bleeding Disorders Committee.

Head, Division for Non-Communicable Diseases, Ministry of Health and Social Action

Senegal

Dr Malick ANNE is a Public Health Specialist and Environmental Health Physician. He currently serves as the Head of the Division for Non-Communicable Diseases (NCDs) at the Ministry of Health and Social Action of Senegal. He is also a Lecturer and Researcher at Gaston Berger University of Saint-Louis, where he leads the Department of Public Health and Social Medicine.

With over fifteen years of experience in health systems management, Dr ANNE has led and contributed to numerous health programs, particularly in HIV, tuberculosis, malaria, and more recently in NCD prevention and control. He has coordinated the development of several national strategic documents, including the 2023–2025 Acceleration Plan for NCDs and the 2025–2029 National Cancer Control Strategy.

Dr ANNE is actively engaged in implementation research and serves as Principal Investigator or Co-Investigator on various projects, including sample-based mortality surveillance, environmental risk factors for chronic respiratory diseases, and the interplay between climate change, air pollution, and health. He leads Senegal’s 2024 STEPS survey on NCD risk factors and is deeply involved in improving access to treatment and care.

At the international level, Dr ANNE is a member of the Expert Review Committee for the Access to Medicine Index, and regularly contributes to global health panels and expert forums focused on health policy, innovation, and universal health coverage.

Miembro lego del consejo directivo Federación Mundial de Hemofilia
Miembro fundador y secretaria, Asociación de Hemofilia de Islas Mauricio

Quatre Bornes, Mauricio

In addition to being a founding member of the Haemophilia Association of Mauritius, Tatiana sits on its Executive Committee and has been the Secretary since its humble beginnings back in 2009. As a member of the bleeding disorders community (her daughter suffers from severe Factor VII deficiency) she has and remains dedicated to improving the care, treatment and management of haemophilia and other bleeding disorders throughout Mauritius. She has been actively involved in the life of the Association and has extensive experience in advocating with Government and large private corporations ensuring the Associations objectives are met and treatment is available to all.

Director ejecutivo, Federación Mundial de Hemofilia

Montreal, Canadá

Alain Baumann is the CEO of the World Federation of Hemophilia (WFH) and has held this position since 2015. Alain brings with him a proven track record leading non-profit as well as for-profit healthcare organizations. Early on in his career, he worked for a major pharmaceutical company holding marketing and general manager positions. Within the non-profit sector he worked for the World Economic Forum as well as for the AO Foundation, a global non-profit organization focusing on education and research in orthopedic surgery.

Owner, Neil Bertelsen Consulting

Berlín, Alemania

As a patient advocate in the 1990s, Neil observed that people living with conditions were not being included in decision making. Since then, Neil has devoted his time to work globally across all disease areas to ensure that meaningful engagement happens to shape decisions that affect our healthcare.

Neil works directly with Health Technology Assessment bodies, regulators, patient groups and the industry to develop patient engagement processes that truly inform decision-making. Neil is the past chair of HTAi’s Patient & Citizen Involvement in HTA group, and currently sits on the board of PFMD, where he also co-leads the Patient Experience Data workstream.

Haematologist and Paediatrician, University Hospital Brno, Masaryk University, and Institute for Postgraduate Education of Health-care Professionals

Brno y Praga, República Checa

Jan Blatný, MD, PhD, is Consultant Haematologist at the Department of Paediatric Haematology and Biochemistry and the Director of the Paediatric Haemophilia Comprehensive Care Centre of University Hospital Brno. He is also an Associate Professor of Paediatrics at Masaryk University in Brno, Czech Republic, serves as Consultant Paediatric Haematologist in National Institute for Children´s Diseases in Bratislava, Slovakia and chairs The Department of Paediatrics at The Institute for Postgraduate Education of Health-care Professionals in Prague, Czech Republic. His research interests encompass paediatric and adult haematology, thrombosis and haemostasis, and life-threatening bleeding. Dr Blatný is a member of numerous national and international haematology organizations. He serves on the steering committee and is a coordinator of the Czech National Haemophilia Programme, President and a member of Executive Committee of EAHAD, member of MAG (Medical advisory group) of EHC, member of the Working Party on population PK of the ISTH SSC Subcommittee on Factor VIII and IX and Rare Bleeding Disorders and a reviewer for several haematology journals. Dr Blatný’s publication credits are 9 book chapters and over 100 articles published in peer-reviewed journals. Between years 2020 and 2021 he served as a Minister of Health of The Czech Republic

Director, Katharine Dormandy Haemophilia & Thombosis Centre, Royal Free Hospital

Londres, Reino Unido

Professor Chowdary is a Professor of Haemophilia and Haemostasis at Dept. of Haematology, University College of London (UCL) and Centre Director for the Katharine Dormandy Haemophilia & Thrombosis Centre, Royal Free Hospital. In addition, she is the Chairperson for the United Kingdom Haemophilia Centre Doctors Organisation and is co-director of the National Haemophilia Database. Her clinical interests include the care of patients with Haemophilia and related bleeding disorders. Her primary research interests focus on strategies for the personalised management of haemophilia, novel therapies in haemophilia, acquired coagulopathy and bleeding. She is an active clinical researcher and is the chief investigator for several non-interventional and interventional studies, including the UK EHL registry and UCL-sponsored gene therapy studies in haemophilia A and B. She has authored more than 100 peer-reviewed publications, including three textbook chapters. She is a chair and member of various national and international working parties, data safety monitoring boards, trial steering committees, and national research peer review panels. She is also a member of numerous professional societies, including the International Society on Thrombosis and Haemostasis, the British Society of Haemostasis and Thrombosis, the European Association of Allied Bleeding disorders and the World Federation of Haemophilia.

Program Manager, Education and Training, World Federation of Hemophilia

Montréal, Canadá

Emily Blanchette is the current Program Manager, Education and Training in the Global Development department at the WFH. Prior to this role, she was the Program Coordinator for IEQAS and IHTC. Before joining the WFH, Emily worked as the Programs and Member Services Coordinator for the Canadian Hemophilia Society – Quebec Chapter (CHSQ), and she assumed the Interim Executive Director position for 5 months. Before working at the CHSQ, Emily had been a volunteer with them for many years and was the youth representative of the board of directors for 2 years. Emily is part of the bleeding disorders community. Her younger brother has severe hemophilia A, and her best friend of 20+ years has dysfibrinogenemia. Emily holds a bachelor's degree in international relations and international law from the Université du Québec à Montréal and is currently completing a master's degree in public administration from l’École nationale d’administration publique.

Director – Research and Data, World Federation of Hemophilia

Montréal, Canadá

Donna Coffin, MSc is currently the Director, Research & Data at the World Federation of Hemophilia (WFH) in Montreal, Canada. Donna is an epidemiologist, trained at McGill University in Montreal, and has spent much of her career conducting evidence based research for health care and regulatory agencies around the world. Since joining the WFH in 2016, Donna has established the Research & Data department, with focus on the development and implementation of the World Bleeding Disorders Registry. Her team is also responsible for all WFH research activities, including the WFH Annual Global Survey, the WFH Clinical Research Grant Program, and the production of evidence-based advocacy tools used to promote treatment for all.

Chief of Medicine, Brigham and Women's Faulkner Hospital

Boston, Estados Unidos

Dr. Nathan Connell is Chief of Medicine at Brigham and Women’s Faulkner Hospital, Vice Chair of Medicine at Brigham and Women’s Hospital, Associate Director of the Boston Hemophilia Center, and Associate Professor of Medicine at Harvard Medical School. His clinical practice focuses on inherited bleeding disorders and he researches cost-effective strategies for the diagnosis and management of hematologic diseases. A graduate of Cornell University, the University of Miami School of Medicine, and the Harvard School of Public Health, he completed an internal medicine residency and a hematology/oncology fellowship at Brown University. In addition to his work defining the field of systems-based hematology, he co-chaired the ASH ISTH NHF WFH Guidelines on the Diagnosis and Management of von Willebrand disease.

Government Relations Manager, National Bleeding Disorders Foundation

Nueva York, Estados Unidos

Matt Delaney is the Government Relations Manager at the National Bleeding Disorders Foundation, focusing on state and federal healthcare policy. Born with a vonWillebrand’s disease and a platelet disorder, Matt has navigated life with a bleeding disorder and uses his experience to inform NBDF’s public policy agenda.

Prior to joining NBDF, Matt served as a Legislative Aide in the New York State Senate and in behavioral health policy for New York State. Within his role at NBDF, Matt has coordinated NBDF’s leadership of the American Plasma Users Coalition (APLUS) focusing on blood and plasma safety and supply, and was a member of the CoreVWD and PROBE studies, reporting on patient outcomes important for those living with vonWillebrand’s Disease.

A lifelong resident of Upstate New York, Matt enjoys hiking and biking in the Adirondacks, playing bass guitar, and is currently completing his Masters in Public Administration at the Rockefeller School of Government Affairs in Albany, New York.

Program Coordinator, Haemophilia Association of Mauritius

Quatre Bornes, Mauricio

Minackshi is employed at the Haemophilia Association of Mauritius as Programme Coordinator on a full-time basis since 2016 and is responsible for the Monitoring and Evaluation of Programmes and Projects. She has a vast experience in the field of NGO since 2009 mainly in poverty, disability, environment and health sector working with direct beneficiaries as well as handling all Financial Tasks of these Associations. Pursuing her ACCA Level 2 after her BSc in Social Work has proved to be only beneficial for her.

She has had the opportunity to participate in different training sessions in Project Write up, Strategic Planning and has also benefitted from various education sessions by National and International Health Care Professionals in the field of Haematology.

She is involved in Workshop conducted for Women with bleeding disorders in Mauritius at the Association and has had the opportunity to conduct several presentations to educate and empower these women. She has actively participated in a psychosocial session with the Adult, Youth, Children, and Women with bleeding disorders.

She was responsible for developing the Community based Programme for Youths at the SOS Children’s Villages in different localities and has also shared the experience – NMO Leadership Perspective with the WFH through a Presentation.

She has represented the Country from the Non-Profit Organization (NPO) sector in 2021 on Countering Terrorism Financing risks with the Financial Action Task Force (FATF) – European Union and has positively contributed to remove Mauritius from the Grey List of countries under increased monitoring by showing how the strategic deficiencies of the Association has been addressed.

She has also been a Part time Accounting Educator working with Youngsters aged 15 to 21 years and guiding them towards their career.

Presidente, Federación Mundial de Hemofilia

Caracas, Venezuela

Cesar Garrido was born in Caracas, Venezuela. He has two sons, one of whom has hemophilia A, which was the impetus for him becoming a committed member of the bleeding disorders community—a commitment which began over two decades ago.

In 1996, Garrido became a member of the Venezuelan Association for Hemophilia (AVH). He has held a number of roles in that organization, including being a member of the Board of Directors and Treasurer and Project Manager. At the AVH, he has been key member of several endeavours, including the creation of new diagnostic laboratories in Venezuela, and campaigns for testing and diagnosis of people with hemophilia (PWH) in Venezuela and Latin America. He was also part of national programs which increased access to factor, developed outreach and identification campaigns, increased access to education, and set up regional medical workshops for PWH.

At the international level, Garrido was an Advisory Board member of the International Alliance Patient Organization (IAPO) and has been a member of HERO (Haemophilia Experiences, Results and Opportunities) since 2010. He was also a development manager for a strategic alliance of 27 countries from the Americas—called the Coalition of the Americas (CoA)— that was set up to influence public policies.

The WFH has been a big part of Cesar Garrido’s life since 1999. He was a member of the Board of Directors from 2002 to 2010 and was most recently lay member from 2014 until his election as President in 2020. He has held a number of important roles at the WFH, including chair of the Accreditation Committee, chair of the Hemophilia Organization Twinnings (HOT) Committee, co-chair of Capacity Building Committee, national member organization (NMO) Vice President, and member of the President’s Strategic Council.

Vicepresidente de ONM, Federación Mundial de Hemofilia
Jefa del Departamento de Hematología Biológica Hospital Aziza Othmana

Túnez, Túnez

Dr Emna Gouider is currently a professor of Hematology in the medical university of Tunis El Manar in Tunisia. She is the head of the hemophilia center in Aziza Othmana Hospital in Tunis, which has more than 700 people with bleeding disorders. She has an experience of more than 15 years with low dose prophylaxis for treatment of PWH.

She is the WFH VP NMO, and she is involved in several WFH committees.

She also has been involved in the Tunisian Association of Hemophilia as a member responsible for medical and scientific affairs since 2001, and organized and conducted several nurse workshops, lab workshops, patients workshops and musculoskeletal workshops. Improvement of care and quality of life of persons with inherited bleeding disorders is one of her main goals.

BOD Medical member, World Federation of Hemophilia

Bruselas, Bélgica

Cedric Hermans is Head of the Division of Haematology, the Hemostasis and Thrombosis Unit, and the Hemophilia Center at Saint-Luc University Hospital in Brussels. He has been a Full Professor at the Catholic University of Louvain since 2012 and Vice-Dean since 2015.

He has authored over 350 peer-reviewed articles and is involved in multiple scientific societies, advisory boards, and international research projects. A former President of EAHAD, he currently serves on the Board of the World Federation of Hemophilia, is an Associate Member of the Belgian Royal Academy of Medicine, and Editor-in-Chief of Haemophilia.

His research focuses on haemostasis and thrombosis, including haemophilia care in diverse settings, novel anticoagulants, and thrombosis management.

BOD Lay member, World Federation of Hemophilia
Doctoral fellow, Lausanne University Hospital

Lausana, Suiza

Mathieu Jackson has Hemophilia B. Originally from Montreal, Canada, he has been involved in patient advocacy for over a decade with the Canadian Hemophilia Society and its Quebec chapter, as well as the World Federation of Hemophilia, of which he is presently on the board of directors. More recently, he has become an active member of the Swiss hemophilia society. He received the 2017-2018 International AFFIRM fellowship for patient advocacy and leadership. From 2016 to 2024, he was head of the School of partnership at the Centre of Excellence on Partnerships with Patients and the Public in the University of Montreal Hospital Research Centre, where he contributed to the “Montreal Model” of patient partnership. Mathieu holds a master’s degree in educational sciences from University of Montreal and is presently doctoral fellow at the University Department of Child and Adolescent Psychiatry, Lausanne University Hospital, where he works on the participation of children and adolescents in healthcare.

General Secretary and National Women Group Coordinator, Hemophilia Foundation Pakistan

Rawalpindi, Pakistán

Abira Maheen is a doctor by profession and a person with a bleeding disorder (VWD type 3). She has been associated with the bleeding disorder community as a volunteer since 2017. She has worked with youth but her main area of interest is women with bleeding disorders and how she can help them live as strong, independent individuals of society.

Director ejecutivo Fundación de Hemofilia de Paquistán

Lahore, Pakistán

Mr. Masood Fareed Malik is a Person with Hemophilia and a well-known community activist in Pakistan. He has been working very closely with Hemophilia Foundation - Pakistan [HFP] and its Chapters since 2000. Mr. Malik is currently serving as CEO of Hemophilia Foundation. In his previous voluntary role, he served as “President & Founder” of the organization and represented the Bleeding Disorders Community on many national, regional, and international platforms. Mr. Malik has been a tireless advocate for achieving treatment for all those living with bleeding disorders in Pakistan. He strongly believes in the greater involvement of community members at all decision-making levels. He has the capacity to handle cross-cultural sensitivity concerning hemophilia and aims to make use of his experience and abilities to provide support to community members especially the underprivileged. Malik has a Master’s degree in Business Administration [MBA] among other qualifications.

Senior Hematology Consultant, Center for Thrombosis and Hemorrhagic Diseases, IRCCS Humanitas Research Hospital

Milán, Italia

Maria Elisa Mancuso (MD, PhD) is an Hematologist and works as a Senior Hematology Consultant at the Center for Thrombosis and Hemorrhagic Diseases of IRCCS Humanitas Research Hospital in Rozzano, Milan, Italy. She is Adjunct Clinical Professor at Humanitas University. She obtained a post-degree in Clinical and Experimental Hematology and a PhD in Clinical Methodology. She is involved in clinical research and has published several original articles in peer-reviewed journals as The Lancet, Blood, Journal of Thrombosis and Haemostasis, Haematologica, Thrombosis and Haemostasis, British Journal of Haematology and Haemophilia. She is reviewer for several peer-reviewed journals and member of the Editorial Board of JTH. She is a member of several scientific societies (ISTH, WFH, ASH, EAHAD, SISET, AICE, EHA) and she is involved as medical member in the Extremely Rare & Inhibitor (ERIN) Working Group of the European Hemophilia Consortium (EHC). She is the Chair of the Medical Advisory Group of the EHC and vice-president of the Italian Association of Hemophilia Centers (AICE). She has acted as co-chair of the Scientific and Standardization Subcommittee of ISTH on FVIII, FIX and rare bleeding disorders. She has been involved as principal and co-investigator in several clinical trials, and she takes care of both children and adults with hemophilia and other congenital bleeding disorders with a specific scientific interest in novel therapies, prophylaxis, synovitis and treatment individualization.

Presidente del grupo juvenil Federación de Hemofilia (India)

India

Santosh is a person with severe hemophilia B. He is the business manager at a US-based business development agency. Santosh has been volunteering for the cause from the age of 15 and is currently the chairman of the youth group of Hemophilia Federation (India). He has been a part of the Youth group for almost a decade and works with youth from all over India. Santosh loves working with youth from all parts of the country as it allows him to learn and hence shape programs for the youth across the country. Santosh is also a member of the youth committee of the World Federation of Hemophilia. Santosh loves technology and has worked with companies from around the world with cutting-edge technologies in the field of Blockchain, Machine learning, and Genomics. He enjoys long motorcycle rides, travel, and music.

Directora de desarrollo mundial Federación Mundial de Hemofilia

Montreal, Canadá

Salome Mekhuzla, WFH Director, Global Development leads a team responsible for implementing various healthcare development, capacity-building and advocacy programs around the globe. Originally from the country of Georgia, her prior experience while working with European and US-based international NGOs on civil society development, advocacy and inter-ethnic relations in the South Caucasus region serves her well in her current role. She holds a MSocSc degree in Transformation in South Caucasus from Tbilisi State University, Center for Social Sciences and a MSc in Nationalism Studies from the University of Edinburgh.

Team lead, EML Secretariat, World Health Organization

Ginebra, Suiza

Dr Lorenzo Moja is a scientist in the Essential Medicines List team at WHO headquarters in Geneva. Lorenzo is a medical doctor and clinical epidemiologist with specialty in public health and community medicine. He received his academic training in Italy, UK (PhD) and Canada. Before joining WHO in 2015, he was Associate Professor of Hygiene and Community Medicine in the Medical Faculty of the University of Milan in Italy.

Director, Health Products Policy and Standards Department, Access to Medicines and Health Products Division, World Health Organization

Ginebra, Suiza

Mr. Mubangizi is a senior regulator with experiences in the regulation of pharmaceutical products, Vaccines, Vector Control Products and In-Vitro Diagnostics. He is currently the Director of the Health Products Policy and Standards Department of the World Health Organization, based in Geneva, Switzerland. Prior to joining WHO in 2008, Mr. Mubangizi had served as the Chief Inspector of Drugs (1996 - 2008) where he was one of the founder staff of Uganda’s national medicines regulatory agency, National Drug Authority (NDA), in 1994. In 1995, he worked with consultants appointed by WHO to establish a drug registration system for Uganda and subsequently coordinated a team that established the GMP inspection system for local and foreign manufacturing facilities marketing their products in Uganda. He headed the Inspectorate and Licensing Department of NDA Uganda from 1996 to March 2008. He participated in the initiation of medicine regulation harmonization in East Africa and Africa in General. In 2004 he joined a team of external dossier assessors for WHO Prequalification where he was shortly promoted to the level of senior assessor. He has, on behalf of his country Uganda and for WHO Medicines Prequalification Programme, inspected sites in African, Europe, Asia, North America and South America for the manufacture of Finished Pharmaceutical Products, Active Pharmaceutical Ingredients, Vaccines and In-vitro diagnostics; national quality control laboratories; and Clinical Research Organizations where bio-equivalence studies are conducted.

Reino Unido

Jamie O’Hara is a distinguished health economist and senior academic at the University of Chester, widely recognized for his extensive contributions to haemophilia research and health policy. Living with severe Haemophilia A himself, Jamie brings both personal insight and academic rigor to his work, making him a respected voice in the global haemophilia community.

He has published extensively in peer-reviewed journals, particularly in the areas of disease burden, health economics, and outcomes research. His leadership in the largest-ever study into the burden of haemophilia has not only advanced scientific understanding but also informed national and international health policy decisions. Jamie’s work continues to influence the development of treatment pathways, funding models, and patient-centered care strategies across Europe and beyond.

Dedicated to advocacy and support, Jamie currently contributes his expertise to leading organizations including the UK Haemophilia Society, the European Haemophilia Consortium, and the World Federation of Hemophilia. Having stepped away from a professional role in the private sector, he is now focused on deepening his involvement in the charitable sphere—driving forward change through evidence, policy advocacy, and community empowerment.

Chief Executive, Irish Haemophilia Society

Dublín, Irlanda

Brian O’Mahony is the Chief Executive of the Irish Haemophilia Society, a former President of both the World Federation of Hemophilia and the European Haemophilia Consortium. He is a former board member of the Irish Blood Transfusion Service and Chairperson of their research committee. He is the author or co-author of more than 100 peer reviewed scientific journal articles and 2 editions of a tender and procurement guidebook for WFH. He is a Fellow of the Academy of Clinical Science and Laboratory Medicine (Ireland) and a Fellow of the Institute of Biomedical Sciences (UK). He has postgraduate qualifications in Management and in Occupational Health and Safety and is currently an assistant adjunct Professor in Health Service Management in Trinity College, Dublin. Brian was born with severe Haemophilia B and is currently participating in a Gene Therapy clinical trial.

Consultor, Seguridad y abasto de productos terapéuticos Sociedad Canadiense de Hemofilia

Québec, Canadá

David Page works part-time as a consultant on safety and supply issues related to coagulation products for the Canadian Hemophilia Society (CHS). He served as a volunteer with the CHS from 1982 to 2001, including a 2-year term as President in the early 1990s. In 2001, he left the field of teaching and educational publishing to take a staff position with the CHS. He was National Executive Director from 2006 to 2017. He has a volunteer role with the World Federation of Hemophilia on the Coagulation Products Safety, Supply and Access Committee. David has severe factor IX deficiency.

President, Urugyayan Hemophilia Association

Coordinator, Coalition of the Americas

Uruguay

Juan Andrés Pereira de Souza is a 45-year-old person with severe haemophilia type A. He is a tenured teacher and teacher-trainer of English in Uruguay, South America. He holds an MA in Teaching English as a Foreign Language and several certifications on Project Management, Leadership and Coaching. He is the president of the Uruguayan Hemophilia Association and Coordinator in the Coalition of the Americas.

National Programs Director, Canadian Hemophilia Society

Canadá

Natalie Philbert holds the position of the Canadian Hemophilia Society (CHS) National Programs Director. Prior, Natalie worked for Hemophilia Ontario as the Manager of Women’s Services and Programs. She is known for her collaborative working style and programming experience, recently taking part in the CHS Strategic Plan working group and in the CHS Remote Care Access Initiative working group. Natalie contributed to both these working groups based on her programming expertise and her experiences living with von Willebrand disease (VWD). Prior to joining the Hemophilia Ontario team, Natalie was trained in psychotherapy and counselling, following her Master of Arts in Community Psychology, Department of Psychology at Wilfrid Laurier University. Natalie has over 20 years experience working in community programming and research roles. She also worked for the Ontario Office of the Children’s Lawyer which is an independent law office in the Ministry of the Attorney General that delivers justice programs on behalf of children. In addition, she was part of the Centre for Community Based Research, ensuring the ethical conduct of research projects. Natalie is currently completing a Ph.D. in the Department of Social Work, Wilfrid Laurier University. Her dissertation focus is the delayed diagnosis for women living with bleeding disorders.

Vice-president Medical, World Federation of Hemophilia

La Jolla, Estados Unidos

Dr. Glenn Pierce currently serves on the WFH as VP Medical and WFH USA Board of Directors and NBDF (US) Medical and Scientific Advisory Council. He has contributed to the development of multiple new products for the treatment of hemophilia and has over 200 publications. He is an Entrepreneur-in-residence at Third Rock Ventures, and a biotech consultant in the gene therapy and hematological areas. Glenn has been involved in the development of over 6 licensed drugs for hemophilia A or B. He now consults on next generation gene therapies for hemophilia and other monogenic and acquired diseases.

President, The Netherlands Haemophilia Society

Países Bajos

Arnoud Plat, living in The Netherlands with his wife and two kids. Severe haemophilia A patient with joint damage. Since 4 years president of Dutch patient association for everyone with a congenital bleeding disorder.

Copresidente, Comité sobre EVW del EHC
Miembro de la Sociedad Austriaca de Hemofilia

Austria

Julia Rauscher was born in 1987 in Austria. She works as a self-employed orthopaedic shoemaker. Julia was diagnosed with VWD Type 2N at the age of 25, without any family history of bleeding disorders. She is a member of the Austrian Haemophilia Society (ÖHG where she volunteers for women with bleeding disorders. She also has been a member of the EHC's VWD Committee since it was founded in 2020 and is its Co-Chair since 2023.

Head of Programmes, South African Haemophilia Foundation

Ciudad del Cabo, Sudáfrica

Bradley Rayner is a volunteer of the South African Haemophilia Foundation for more than 3 decades. He presided as the National Chairperson of SAHF and currently has the portolio of programmes. He participates in various international programs and advocacy groups. Bradley has developed training modules for Youth and NMO development. As a volunteer of WFH, he has been an invited speaker and chair at various congress’s and provided NMO training on Strategic Planning at the Glasgow GNMOT as well as various countries in MEA. Bradley Rayner received the 2022 WFH International Frank Schnabel Volunteer Award. Bradley is a person with Haemophilia A.

Miembro lego del consejo directivo Federación Mundial de Hemofilia
Directora de operaciones National Hemophilia Foundation

Gibsonia, Estados Unidos

Dawn has been a leader in the bleeding disorders community for many years. As a parent of a son with hemophilia and as a symptomatic carrier, she founded the Rocky Mountain Hemophilia & Bleeding Disorders Association in Bozeman, Montana and served as its Executive Director. After moving to Pittsburgh, Pennsylvania, she served as a board member for the Hemophilia Center of Western Pennsylvania for six years and then as Executive Director of the Western Pennsylvania Chapter. She has been with the National Bleeding Disorders Foundation (formerly National Hemophilia Foundation) for 16 years and serves as Chief Operating Officer. Dawn serves on the Board of Directors for the World Federation of Hemophilia and World Federation of Hemophilia USA. Dawn proudly chairs the Women and Girls with Bleeding Disorders and the Hemophilia Organization Twin Committees for WFH. She holds a Bachelor of Science from Montana State University.

Gerente regional, Mediterráneo del Este Federación Mundial de Hemofilia

Montreal, Canadá

Rana Saifi is the Regional Manager for the Middle East at WFH since 2015. She is based in Montreal, Canada and travels frequently to the region. When she first started with WFH, she was also responsible for the Africa region. Ms Saifi has a background in International Development. Before moving to Montreal, she worked in the region with international NGOs, the Canadian Embassy in Amman and the British Embassies in Jordan and Yemen. She also worked as a Middle East Social Development Adviser with the UK’s aid ministry – the Department for International Development in London. She holds a BSc Business Administration and an MSc in International Development from the School of Oriental and African Studies in London, UK.

General Secretary, Hemophilia Society of Bangladesh

Bangladesh

Abu Sayeed Arif holds bachelor’s and master’s degrees in Information Systems and Business Administration from Emporia State University, Kansas, USA. With a diverse background—from Business Analyst to Director of Operations to university teaching—he brings experience from both the USA and Bangladesh, having served in public and private universities.

A proud father of a 9-year-old son living with Severe Hemophilia, Arif is deeply engaged in advocacy. He serves as the General Secretary of the Hemophilia Society of Bangladesh and passionately represents the country in global platforms like the WFH Congress. He also leads the PCAT program, supporting marginalized communities and driving positive social change.

Presidente y director ejecutivo, Institute for Policy Advancement Ltd.

Washington, DC, Estados Unidos

Mark Skinner, Washington, DC, is President/CEO of the Institute for Policy Advancement Ltd, specializing in patient-centered outcomes research. He is an Assistant Professor in the Department of Health Research Methods, Evidence and Impact at McMaster University. He has previously led both national and international patient organizations including the World Federation of Hemophilia and National Hemophilia Foundation. He is the principal investigator for the Patient Reported Outcomes Burdens and Experiences (PROBE) study, a global research project to enhance the direct patient voice in healthcare decision-making. He holds numerous roles as an advisor on critical blood safety and supply matters including having served on the US Health and Human Services Advisory Committee on Blood and Tissue Safety and Availability. He serves on the board of the Institute for Clinical and Economic Review (ICER), the National Organization for Rare Disorders (NORD) and formerly the Patient Centered Outcomes Research Institute (PCORI) Advisory Panel on Rare Disease, where he was an inaugural member. Previously, he was Vice President State Programs at the American Insurance Association and Administrative Assistant/Chief of Staff to the Speaker of the Kansas House of Representatives. He holds degrees in Public and Business Administration from Kansas State University and JD from Washburn University School of Law.

Deputy Director, Federal Ministry of Health and Social Welfare

Abuya, Nigeria

Alayo Sopekan Y. is a Public Health Specialist with a flair for quality, cost-effective and efficient evidence-based interventions especially in a poor resource setting with a robust experience, knowledge and expertise in various areas of public health interventions and research including developing health policy.

Over the past 25 years he has worked as a clinician, healthcare administrator, healthcare financing and utilization review expert, disease prevention and epidemiology expert including building capacity, mentoring and developing evidence-based policy and guidelines for health interventions in my country. He has also worked tirelessly to improve the quality of care for people living with Sickle Cell Disease through leading the processes that seek to institutionalize primary prevention and early identification and intervention for those with the disease.

This had spurred him to study the feasibility of integrating early interventions for SCD into the existing health services at the primary healthcare level in Nigeria as an intervention research at the doctoral level.

Dr. Sopekan Y. has also looked at the awareness of newborn screening for sickle cell disease (SCD) by mothers/caregivers as observed in Gwagwalada, FCT, Abuja, Nigeria. He co-authored implementing newborn screening for Sickle Cell Disease as part of immunization programmes in Nigeria.

He has spearheaded and supported development of several health related strategic documents in his country Nigeria including the first national NCDs policy, the guidelines for the control and management of SCD, Diabetes, training curriculum for DRTB, NTDs, National Vaccine Policy, IDSR adaptation for Nigeria and IHR, Protocol and Desk guide for Newborn screening including spearheading the establishment of six zonal SCD centers of excellence across Nigeria, adoption of Universal Newborn Screening policy for Nigeria including validation and adoption of a Point -of-Care screening method for SCD to mention a few.

BOD medical member, World Federation of Hemophilia
Professor and Head, Haematology Research Unit, St. John’s Research Institute
Senior Consultant, Department of Clinical Haematology, St. John’s Medical College Hospital

Bangalore, India

Alok Srivastava is Professor and Head, Haematology Research Unit, St. John’s Research Institute and Senior Consultant, Department of Clinical Haematology in the St. John’s Medical College Hospital at Bengaluru, India. Prof. Srivastava has been involved with the management of patients with bleeding disorders for over 30 years. His recent research focus has been on novel therapies including gene therapy for hemophilia.

Prof. Srivastava is President of the Indian Association for Haemophilia & Allied Disorders and the Indian Association for Cell and Gene Therapy. He is also the Chairman of the Association for Haemophilia & Allied Disorders – Asia-Pacific. He was the chair of the FVIII/IX subcommittee of the SSC of the ISTH from 2006-2010 and currently serves on the ISTH-SSC Gene Therapy steering committee. He is a member of the board of the WFH and was the WFH Vice-President (Medical) from 2012-2014. He has led the writing group for all three editions of the WFH guidelines for the management of hemophilia.

Miembro lego del consejo directivo Federación Mundial de Hemofilia
Vice President, Thai Hemophilia Patient Club

Bangkok, Tailandia

Ekawat Suwantaroj (49), Bangkok, Thailand, was diagnosed with severe hemophilia when he was four months old. He is a graphic designer and owner of a print-design company in Bangkok. He has been a member of National Hemophilia Foundation of Thailand since 2012. In the present, Ekawat is vice president of the Thai Hemophilia Patient Club (THPC) and committee member of the National Hemophilia Foundation of Thailand. Moreover, he has been working with the Thai Rare Disease Foundation (ThaiRDF) as a committee member. He was the first coordinator of Asean Hemophilia Networks (AHN) in 2016. Ekawat was selected to be a WHO patient for patient safety representative from Thailand in 2017. He is now a lay member in the board of directors of the World Federation of Hemophilia (WFH).

State Nodal Officer for Child Health & Rare Diseases, Government of Kerala

Kerala, India

Dr U R Rahul is a distinguished public health expert and pediatrician from the State of Kerala in India. He holds an MBBS degree from Calicut University and an MD in Pediatrics from the Kerala University of Health Sciences, bringing with him over 17 years of clinical experience. Currently serving as the State Nodal Officer for Child Health & Rare Diseases under the Government of Kerala, Dr Rahul oversees several significant initiatives, including the Ashadhara Programme and efforts in tribal health. With a robust background encompassing both clinical practice and the development of public health policy, Dr Rahul has made substantial contributions to enhancing child healthcare infrastructure throughout Kerala, with a particular focus on hemophilia management and the establishment of frameworks for rare diseases.

Chief Physician, Thrombosis and Hemostasis Center, Institute of Hematology & Blood Diseases Hospital

Tianjín, China

Chief physician at Thrombosis & Hemostasis Center, Institute of Hematology & Blood Diseases Hospital, Chinese Academy of Medical Sciences & Peking Union Medical College

Deputy leader of Rare Diseases Group of Chinese Society of Hematology, Chinese Medical Association

Deputy Secretary General of Hemophilia Group of China Alliance for Rare Disease

Executive director of China Hemophilia Youth Cooperation Group