The fourth edition of the WFH Global Policy and Access Summit (GPAS) will take place from July 10 to 11, 2025. Join your colleagues to:
Presentations and discussions during the two-day virtual summit will centre around increasing access to diagnosis, treatment and care for people living with bleeding disorders. The conference will include speakers and participants from local and international partner organizations, national government representatives, healthcare professionals, WFH NMO leaders, and bleeding disorders advocates.
The WFH Global Policy and Access Summit (GPAS) is a unique opportunity to inform, discuss, and exchange knowledge on strategies to increase equitable access to care and treatment for the global bleeding disorders community. We look forward to connecting with you virtually this July!
This two-day virtual event will feature plenary and educational sessions, and slam sessions with advocacy cases—all focusing on topics related to advancing care and access to treatment around the globe.
All session times are listed in EDT.
The Opening Plenary will highlight main WFH strategies to advance health equity in bleeding disorders care globally. WFH leadership will outline the program’s objectives and highlight key themes, including the importance of equitable access to diagnosis, treatment, and care for people with bleeding disorders, regardless of their bleeding disorder, gender, age or where they live. The plenary sets the stage for two days of collaboration, learning, and advocacy.
Chair
Alain Baumann, CEO, World Federation of Hemophilia, Montreal, Canada
Opening remarks – Advancing health equity
Cesar Garrido, President, World Federation of Hemophilia, Caracas, Venezuela
Navigating the evolving treatment landscape for bleeding disorders
This session will explore the rapidly changing therapeutic landscape for bleeding disorders. Speakers will examine the latest innovations in treatment and discuss their implications for clinical practice and patient outcomes. Special attention will be given to access challenges, and reimbursement models.
Chair
Alok Srivastava, Board of Directors medical member, World Federation of Hemophilia, Bengaluru, India
Current and emerging therapies for hemophilia
Cedric Hermans, Head, Hemophilia Centre, Cliniques universitaires Saint-Luc, Brussels, Belgium
Treatment landscape for VWD and other bleeding disorders
TBC
Opportunities and challenges in accessing treatment – reimbursement models
Jamie O’Hara, Senior lecturer of health economics, University of Chester, Stretton, United Kingdom
WHO Essential medicines list 2025 – Update and impact on bleeding disorders
This session will offer the latest updates on the WFH advocacy and submissions as part of the WHO Essential Medicines List (EML) 2025 review. Experts will also discuss the impact of the WHO EML on national procurement policies and health system planning.
Chair
Salome Mekhuzla, Director – Global Development, World Federation of Hemophilia, Montreal, Canada
TBC
Collaborative strategies for increasing access to treatment in bleeding disorders
Learn how multi-stakeholder collaboration can drive sustainable access to care for people with bleeding disorders. Presentations will highlight the use of data to build compelling advocacy cases and strategies for navigating data gaps. A panel of experts will discuss the importance of inclusive approaches that address the needs of WGBD, individuals with VWD, and those with rare bleeding disorders.
Chair
Dawn Rotellini, Chief operating officer, National Bleeding Disorders Foundation, Gibsonia, United States
Leveraging partnerships for effective advocacy
Bradley Rayner, Head – Programmes, South African Haemophilia Foundation, Cape Town, South Africa
Data driven advocacy for sustainable access
Brian O’Mahony, Chief Executive, Irish Haemophilia Society, Dublin, Ireland
Panel discussion on advocating for better treatment for WGBD, VWD, and RBD
Abira Maheen, Joint Secretary, Hemophilia Foundation Pakistan, Rawalpindi, Pakistan
Matthew Delaney, Government relations manager, National Bleeding Disorders Foundation, New York, United States
Natalie Philbert, National program director, Canadian Hemophilia Society, Ontario, Canada
Tatiana Bathfield, Founding member and Secretary, Haemophilia Association of Mauritius, Quatre Bornes, Mauritius
Elevating bleeding disorders with national health policy frameworks
Explore how bleeding disorders can be prioritized within national health systems through effective policy integration. Government officials and NMO leaders will share real-world examples, discuss the role of national health plans, and outline strategies for engaging ministries of health and other key stakeholders. Emphasis will be placed on building sustainable frameworks that ensure long-term access to care and treatment.
Chair
Rana Saifi, Regional manager – Middle East, World Federation of Hemophilia, Montreal, Canada
Panelists
Alayo Sopekan, Deputy Director, Federal Ministry of Health, Abuja, Nigeria
TBC
Around the world in 60 minutes – Successes and lessons learned from WFH NMO advocacy initiatives
Experience a dynamic, fast-paced showcase of advocacy initiatives led by WFH National Member Organizations across diverse regions. Each presentation offers a concise case study highlighting diverse approaches to overcoming barriers in diagnosis, treatment access, and care delivery. Attendees will gain practical insights into what has worked, what challenges remain, and how the lessons learned can be adapted to different contexts.
Chair
Julia Rauscher, Co-chair, European Haemophilia Consortium VWD Committee, Austria
Masood Fareed Malik, President, Hemophilia Foundation Pakistan, Lahore, Pakistan
NMO advocacy initiatives
Advancing Health Equity: PACT Program
Take a closer look at the impact of the WFH Path to Access to Care and Treatment (PACT) Program, launched to strengthen outreach, diagnosis, and increase access to sustainable treatment and care for people with bleeding disorders globally. Learn about the PACT Advocacy Academy and hear directly from program graduates on the impact this course has had on advocacy work in their countries. The session underscores the importance of capacity-building and community leadership in driving systemic change.
Chair
Mathieu Jackson, Board of Directors lay member, World Federation of Hemophilia, Lausanne, Switzerland
Update on the PACT program outcomes and the PACT Advocacy Academy
Salome Mekhuzla, Director – Global development, World Federation of Hemophilia, Montreal, Canada
Sharing of experiences from PACT Advocacy Academy graduates
Shared Decision Making: Transforming Clinical Practice Across Resource Settings
Discover the value of a shared decision-making (SDM) approach in empowering individuals with bleeding disorders to make shared and informed treatment decisions and learn about the WFH SDM Tool. Presenters will explore the application of SDM in both high-income and resource-limited settings, highlighting its role in improving patient satisfaction and outcomes. The session will also introduce tools and frameworks that support the integration of SDM into clinical workflows and advocacy efforts.
Chair
Donna Coffin, Director – Research and Data, World Federation of Hemophilia, Montreal, Canada
Implementing SDM in different resource settings
Emna Gouider, Vice-president NMO, World Federation of Hemophilia, Tunis, Tunisia
Pratima Chowdary, Consultant haematologist, Royal Free Hospital, London, United Kingdom
SDM from the perspective of PWBD
Juan Andrés Pereira de Souza, President, Uruguayan Hemophilia Association, Montevideo, Uruguay
Co-Creating a Sustainable Future for the Bleeding Disorders Community
This session will conclude the GPAS program with a forward-looking dialogue on the future of care, advocacy, and innovation in the bleeding disorders space. Panelists will address persistent gaps in access, emerging treatment technologies, and the role of patient organizations.
Chair
Glenn Pierce, Vice-president Medical, World Federation of Hemophilia, La Jolla, United States
Panelists
Cesar Garrido, President, World Federation of Hemophilia, Caracas, Venezuela
Neil Bertelsen, Owner, Neil Bertelsen Consulting, Berlin, Germany
TBC
Interpretation available in Spanish, French, Russian & Arabic
All times are listed in eastern daylight time (EDT)
Program is subject to change
Register now for this free virtual-only event! Registration grants you access to all sessions on July 10 and 11, 2025.
Please contact [email protected] for more registration information.
The WFH can offer events like GPAS for free thanks to the support given to us by our generous donors. By donating to the WFH you will be supporting national and global advocacy efforts, so that all people with bleeding disorders are given a voice. Your support is vital—please consider donating today at give.wfh.org
Meet the members of the GPAS Program Committee and speakers:
Committee member
Mauritius
Committee member
Canada
Speaker
Berlin, Germany
Committee member
Greece
Speaker
New York, United States
Chair
Venezuela
Committee member
Tunisia
Committee member
Pakistan
Speaker
Brussels, Belgium
Committee member
India
Committee member
Canada
Speaker
Dublin, Ireland
Committee member
Canada
Speaker
Uruguay
Committee member
Austria
Speaker
Cape Town, South Africa
Committee member
U.S.A.
Speaker
Bengaluru, India
Committee member
Canada
Committee member
Thailand
Committee member
U.S.A.
Speaker
Kerala, India
Quatre Bornes, Mauritius
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.
Montreal, Canada
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.
Berlin, Germany
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.
Athens, Greece
Panagiotis (Panos) Christoforou is a Cypriot Greek hematologist specializing in haemophilia and rare bleeding disorders. His work is driven by a strong commitment to advancing equitable access to care, comprehensive treatment strategies, and patient advocacy on both a national and international level.
He currently serves as a member of the WFH Youth Leadership Advisory Committee (2024-2026) and as a Steering Committee member of the European Haemophilia Consortium (EHC) (2024-2028). Additionally, he holds the position of Medical Advisor for the Greek National Member Organization (2023-2025), where he has been instrumental in developing initiatives focused on youth engagement, physical activity promotion, and holistic patient support.
His professional objective is to contribute to the development of multidisciplinary, patient-centered care models and advocate for universal access to haemophilia treatment, ensuring that all individuals affected by bleeding disorders receive the highest standard of care.
New York, United States
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.
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.
Tunis, Tunisia
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.
Lahore, Pakistan
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.
Brussels, Belgium
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.
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.
Montreal, Canada
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.
Dublin, Ireland
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.
Quebec, Canada
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.
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.
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.
Cape Town, South Africa
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.
Gibsonia, United States
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.
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.
Bengaluru, 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.
Montreal, Canada
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.
Bangkok, Thailand
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).
Washington, DC, United States
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.
Interested in catching up on the discussions from GPAS 2023? View recordings of select sessions on the WFH eLearning platform.
All sessions will be available on demand until August 31, 2025, in English only. You can access them on this same event platform. Session recordings in English will appear within 24 hours. All other languages will not be available.
The event will feature live interpretation in Spanish, French, Arabic and Russian.
Login information will be sent to all registered attendees on July 4, 2025.
Please contact [email protected] for more information.
Partner with us to support the WFH 2025 Comprehensive Care Summit and make a meaningful impact in the bleeding disorders community! To learn more, please contact [email protected].
Advocacy
Humanitarian Aid
Identification and diagnosis
Treatment and care
Research and data collection
Training
Education & eLearning
The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.
While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.
Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.
References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.
The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.
If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).
We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.
Recognizing that training women leaders ensures the diversity our community need to thrive; the Hemophilia Alliance has been a longtime supporter of the Susan Skinner Memorial Fund. They deepened their engagement with the global community through the establishment of the Travel Grant Program, which allows US-based multidisciplinary healthcare professionals the opportunity to attend WFH global training workshops. The wealth of experience and perspective attendees bring back home to their communities helps patients across the country. Their patience and support as we grappled with changing norms in these challenging times gave us the flexibility to meet our community’s needs with revamped programming.
National Institute of Immunohaematology (ICMR) and KEM Hospital
Christian Medical College, Vellore
Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)
National Medical Research Center of Hematology of the Russian Academy of Medical Sciences
Van Creveldkliniek
University Medical Centre Utrecht
Nara Hemophilia Centre
Nara Medical University
Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico
National Hemophilia Center, Tel Hashomer
Sheba Medical Center
Paris Haemophilia Centre (Necker (N) and Kremlin Bicêtre (KB) Hospitals)
Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital
Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University
University of Toronto Hemophilia Centres
St. Michael’s Hospital
Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas
Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc
Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology
Ronald Sawers Haemophilia Treatment Centre
Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)
Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)
Singapore General Hospital Haemophilia Treatment Clinic
Hospital Universitario La Paz
Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital
Hemophilia of Georgia has stood with us for over three decades, playing an early role in distributing donated factor via the WFH Humanitarian Aid program. Our relationship has deepened over the years as they continued to support this program and came on board as a founding Chapter Challenge champion in 2016. Their belief in educating future leaders is clear in their investment in the Youth Leadership Workshops, which has led to the training of over 50 young adults. They also support workshops devoted to educating providers and patient leaders on how to collect and use data to advocate for better patient care. Their staff generously volunteer their time as trainers and as well as serving on various committees.
| 2012 | Piet de Kleijn The Netherlands |
| 2010 | Dr. Mammen Chandy India |
| 2008 | Dr. Man-Chiu Poon Canada |
| 2006 | Dr. Norma de Bosch Venezuela |
| 2004 | Dr. Parttraporn Insarangkura Thailand Dr. Carol K. Kasper United States |
The National Bleeding Disorders Foundation helps advance our mission on several fronts. They inspire others to follow their lead as a founding champion of the NHF Chapter Challenge. Their commitment to equality of access is demonstrated in their support of the Cornerstone Initiative, which lays the foundation for care in the world's most underserved regions, as well as programs that aim to raise awareness and improve care of women with bleeding disorders and those with von Willebrand disease. We also benefit from their steadfast engagement with various programs including the WFH Twinning Program and their individual leaders’ contribution to our leadership and committees.
Do you sometimes wish you could do more? A bequest is a simple way for you to make a significant gift without changing anything about your financial security and lifestyle today. Your legacy will sustain care for the generations to come.
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The information on the WFH USA website is provided for general information purposes only. The WFH USA does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH USA recommends that you contact your physician or local treatment centre. Before administering any products, the WFH USA urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.
While every effort has been made to ensure the accuracy of the information on this site, the WFH USA does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.
Messages posted to WFH USA discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH USA social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH USA recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.
References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH USA. The WFH USA is not responsible and assumes no liability for the content of any linked websites.
The WFH USA does not collect personally identifying information about you when you visit our site, unless you choose to provide such information to us. Providing such information is strictly voluntary. This policy is your guide to how we will handle information we learn about you from your visit to our website.
Throughout our website, we provide links to other servers which may contain information of interest to our readers. We take no responsibility for, and exercise no control over, the organizations, views, or accuracy of the information contained on other servers. When linking to the WFH USA, we request that you ensure that there are no associated connections for commercial purposes. Any official use of the name WFH USA or the use of its logo needs to be approved by the WFH USA. If you have a link you’d like us to consider adding to our website, please send an email to [email protected] with the subject “Link request.”
All information, photographs, graphics, and other material on this website are protected by copyright. While users of this website may use the content for personal, non-commercial use, none of the content of this website can be modified, translated, transferred or sold, copied, reproduced, published, or distributed, in whole or in part, without the prior written consent of the WFH USA. To view a copy of the WFH USA’s permissions guidelines, click here.
The WFH USA encourages the dissemination of its information and welcomes proposals on the reprinting, redistribution, and translation of its materials. If you would like to publish information that you find on our website, please send your request to [email protected].
If you have suggestions on how to make the site more accessible, please contact us at [email protected].
Our website provides users the opportunity to opt-out of receiving communications from us through a special online form or via the communication they have received. You may, at all times, choose to receive which communications within the organization you can receive or none at all. You may also update your contact information previously provided to us via another online form.
If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you can contact us at [email protected].
The WFH USA has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH USA staff or falsely stating that they are associated with the WFH USA. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH USA, are fraudulent and come from outside of our organization.
If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH USA emails come from @wfhusa.org or @wfh.org).
We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH USA at [email protected] or call 1-877-417-7944.
| 2022 | Amman (Jordan) – Dublin (Ireland) |
| 2021 | Addis Ababa (Ethiopia) – Minneapolis (U.S.A) and Tehran (Iran) – Milan (Italy) |
| 2020 | Aluva (India) – Newcastle (UK) |
| 2019 | Yogyakarta / Solo (Indonesia) – Utrecht (Netherlands) |
| 2018 | Abidjan (Ivory Coast) – Brussels (Belgium) |
| 2017 | Santa Cruz de la Sierra (Bolivia) – Buenos Aires (Argentina) |
| 2016 | Kampala (Uganda) – London (UK) |
| 2015 | Varna (Bulgaria) – Bonn (Germany) |
| 2014 | Arequipa (Peru) – Los Angeles (USA) |
| 2013 | Davangere (India) – Liverpool (UK) Ludhiana (India) – Detroit (USA) |
| 2012 | Hanoi (Vietnam) – Melbourne (Australia) |
| 2011 | Manado (Indonesia) – Utrecht (Netherlands) |
| 2010 | Delhi (India) – Winnipeg (Canada) Yaoundé (Cameroon) – Geneva (Switzerland) |
| 2009 | Chisinau (Moldova) – Warsaw (Poland) Colombo (Sri Lanka) – Vellore (India) |
| 2008 | Gaborone (Botswana) – Philadelphia (USA) |
| 2007 | Vientiane (Laos) – Brest (France) Damascus (Syria) – Montpellier (France) |
| 2006 | Lima (Peru) – Fort Worth (USA) |
| 2005 | Yerevan (Armenia) – Minneapolis (USA) Casablanca (Morocco) – Caen (France) |
| 2004 | Beirut (Lebanon) – Geneva (Switzerland) Santo Domingo (Dominican Republic) – Caracas (Venezuela) |
| 2003 | Cairo (Egypt) – Knoxville (USA) |
| 2002 | Moscow (Russia) – Liverpool (UK) Panama – Valencia (Spain) |
| 2001 | Bangalore (India) – St. Louis (USA) |
| 2000 | Pune (India) – Bradford (UK) |
| 1999 | Montevideo (Uruguay) – Buenos Aires (Argentina) Tianjin (China) – Calgary (Canada) |
| 1998 | Plovdiv (Bulgaria) – Bonn (Germany) |
| 1997 | Bogota (Colombia) – Los Angeles (USA) Tartu (Estonia) – Stockholm (Sweden) |
| 1996 | Timisoara (Romania) – Munich (Germany) Riga (Latvia) – Munster (Germany) |
| 1995 | Klaipeda (Lithuania) – Malmo (Sweden) |
| 1994 | Bratislava (Slovakia) – Tel Hashomer (Israel) |
Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital
| 2025 | Greig Blamey Canada |
| 2023 | Nicholas Goddard United Kingdom |
| 2021 | Axel Seuser Germany |
| 2019 | Dr. Adolfo Llinás Colombia |
| 2017 | Pamela Hilliard Canada |
| 2015 | Kathy Mulder Canada |
| 2013 | James Luck United States |
| 2012 | Piet de Kleijn The Netherlands |
| 2011 | Dr. Lily Heijnen The Netherlands |
| 2010 | Dr. Horacio Caviglia Argentina |
| 2009 | Jerome D. Wiedel United States |
| 2008 | Dr. Federico Fernández-Palazzi Venezuela |
| 2007 | Michael Heim Israel |
| 2006 | Brenda Buzzard United Kingdom |
| 2005 | Dr. Marvin Gilbert United States |
| 2025 | Shubhranshu S. Mohanty India |
Haemophilic pseudotumour – New improvised classification system and its outcome in 168 cases at a Tertiary care centre |
| 2021 | Baolai Hua China |
The effects of intra-articular injection of TNF-alpha Antagonists in treatment of haemophilic synovitis |
| 2019 | Maarten Eerdekens Belgium |
Association between multi-segment foot kinetics and blood induced joint damage in adult patients with hemophilic ankle arthropathy |
| 2017 | Fabio Souza Brazil |
Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis |
| 2015 | SM Javd Mortazavi Iran |
Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure |
| 2013 | Lize F.D. van Vulpen United States |
A fusion protein of IL4 and IL10, is equally effective in protecting cartilage from blood-induced damage compared to the individual components |
| 2012 | Horacio Caviglia Argentina |
Pseudotumor Surgery in Haemophilia A patients: Comparitive results between inhibitor and non-inhibitor patients |
| 2011 | Nick Goddard United Kingdom and Monique van Meegeren The Netherlands |
Early onset administration of IL-4 and IL-10 prevents blood-induced cartilage damage in vitro |
| 2010 | Lydia Abad-Franch Spain |
Influence of an Aquatic Training Protocol on the Reduced Risk of Cardiovascular Morbidity and Mortality in a Hemophiliac |
| 2009 | Sebastien Lobet Belgium |
Impact of Hemophilia Ankle Arthropathy on Gait Disability: Analysis of Energetic and Mechanical Variables |
| 2008 | Jose Alberto Tlacuilo-Parra Mexico |
Bone Turnover Markers and Bone Mineral Density in Children with Hemophilia |
| 2007 | Natalie Jansen The Netherlands |
Protective Abilities of Interleukin-10 in Blood-induced Cartilage Damage |
| 2006 | Axel Seuser and E. Kusch Germany |
Multi-Center Study of Orthopedic Outcome of the Lower Extremities in 249 Children with Hemophilia |
| 2005 | Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders The Netherlands |
The Hemophilia Activities List: Final development and validation of a hemophilic-specific self-assessment questionnaire on functional abilities |
| 2004 | Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber The Netherlands |
Radiosynoviorthesis using YTTRIUM-90 results in adverse direct effects on cartilage: a human in vitro study |
| 2003 | Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman Germany |
How to advise young haemophiliacs to find the right sport? A new and safe algorithm |
| 2002 | James Luck, Jr. and Mauricio Silva United States |
Long-Term Review of Total Knee Arthroplasty |
| 2001 | Federico Fernández-Palazzi Venezuela |
Oxytetracycline Chlorohydrate: A new material for chemical synovial orthoses |
| 2000 | Horacio Caviglia Argentina |
Pseudotumours |
| 1999 | William J. Ribbans and J.L. Hicks United Kingdom |
Communication and Co-operation for the New Millennium – The Future of the Musculoskeletal Committee in the 21st Century |
| 1998 | Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero Colombia |
Chromic phosphate synoviorthesis without age restriction should be the first treatment option for chronic active hemophilic synovitis |
The outcomes of interest collected by the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and patient-reported outcomes.
The WBDR includes five functional scales as part of its extended data set:
The WBDR Minimal Data Set (MDS) is a set of data on demographics, diagnosis, symptoms and treatment which are collected on patients participating in the WBDR.
The WBDR Extended Data Set (EDS) is a larger set of data, with more details than the MDS, which includes questions on patient demographics, diagnosis, symptoms, treatment and burden of disease. The EDS can be used by hemophilia treatment centers to collect data on patients participating in the WBDR. The WBDR Extended Data Set (EDS), was added to the database in March 2019.
Nationwide Children’s Hospital
Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston
Mount Sinai School of Medicine
Mount Sinai Medical Center
Mayo (Rochester) Comprehensive Hemophilia Center, and International Hemophilia Training Center (WFH)
Mayo Clinic/Foundation and Mayo Medical School
Hemophilia & Thrombosis Treatment Center
University of California San Diego
Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital
Oxford Haemophilia and Thrombosis Centre
Churchill Hospital
Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital
International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University
The WFH was established in 1963 by Frank Schnabel, a Canadian businessman born with severe hemophilia A. He believed that patient organizations could be much more effective—and do more to represent the interests of people living with bleeding disorders—if they worked together. The first WFH Congress was held in Copenhagen, Denmark, on June 25, 1963, and was attended by representatives from 12 countries. Now, the WFH and our global network of national member organizations (NMOs) represent the interests of people with hemophilia and other inherited bleeding disorders in 152 nations.
