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13–14 noviembre 2025
Montreal, Canadá
¡Anótelo en su calendario! El 14o Foro Mundial de la Federación Mundial de hemofilia (FMH) tendrá lugar en persona, del 13 al 14 de noviembre de 2025, en el hotel William Gray, en la hermosa ciudad de Montreal, Canadá. El foro de este año se centrará en los avances y el acceso a productos de tratamiento seguros para los trastornos de la coagulación.
El Foro Mundial de la FMH constituye un evento esencial para cualquier persona interesada en los acontecimientos que actualmente afectan a la comunidad mundial de trastornos de la coagulación. Los participantes obtendrán una singular perspectiva mundial sobre los últimos avances en la atención y tendrán la oportunidad de interactuar directamente con expertos internacionales impulsores de la innovación en este campo. El Foro abordará una amplia gama de temas oportunos y urgentes, entre los que se cuentan los siguientes:
El Foro Mundial estará coencabezado por el doctor Glenn Pierce, PhD, vicepresidente médico de la FMH, y Radoslaw Kaczmarek, presidente del Comité de la FMH sobre seguridad, abastecimiento y accesibilidad de productos de tratamiento (CPSSA por su sigla en inglés).
¡Esperamos darles la bienvenida en Montreal el próximo mes de noviembre!
Nota: El 14o Foro Mundial de la FMH se ofrecerá exclusivamente en inglés.
François Legault, Primer Ministro de Quebec, da una calurosa bienvenida a todos los asistentes al 14º Foro Mundial de la FMH, que se celebrará este año en Montreal.
Lea la carta de François Legault, Primer Ministro de Quebec.
Este evento en persona, de dos días de duración, que tendrá lugar en el Hotel William Gray en Montreal, contará con presentaciones plenarias, sesiones educativas e intercambios interactivos, todos centrados en los avances y el acceso a productos de tratamiento seguros para los trastornos de la coagulación.
Todas las horas indicadas corresponden al horario de estándar del este (EST)
El programa está sujeto a cambios
¡Socialice, converse y cultive valiosas conexiones durante nuestra exclusiva cena de bienvenida para establecer contactos, a la vez que saborea algunas de las famosas delicias culinarias de Montreal!
El Foro Mundial de la FMH tendrá lugar en persona, en Montreal, Canadá.
¡La inscripción ya está abierta!
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Nota: El 14o Foro Mundial de la FMH se ofrecerá exclusivamente en inglés.
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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.
Indianápolis, Estados Unidos
Dr. Radek Kaczmarek is an Assistant Research Professor of Pediatrics at Gene and Cell Therapy Laboratory, Wells Center for Pediatric Research, Indiana University School of Medicine (Indianapolis, IN). Dr. Kaczmarek completed his PhD in molecular biology at Hirszfeld Institute of Immunology and Experimental Therapy in Wroclaw, Poland, and MSc in biotechnology at University of Wroclaw, Poland. His research interests include immune responses to gene and protein replacement therapies for hemophilia A and B. Since joining faculty at the Indiana University School of Medicine he has focused on studying the immunogenicity of factor VIII and adeno-associated virus (AAV)-mediated gene therapy for hemophilia A. He has authored more than 60 peer-reviewed publications. His work has been honored with several awards and presented at American Society of Hematology annual meetings, International Society for Thrombosis and Haemostasis and other key international conferences.
Radek is the Chair of the Coagulation Product Safety, Supply and Access (CPSSA) Committee of the World Federation of Hemophilia (WFH), is a member of the WFH Medical Advisory Board, a member of the ISTH Scientific and Standardization Committee (SSC) Working Group on Gene Therapy Steering Committee, a member of the European Haemophilia Consortium (EHC) Medical and Scientific Advisory Group, and a member of the European Haemophilia Safety Surveillance (EUHASS) Steering Committee. He has served on multiple scientific advisory boards and as an ad-hoc expert for the European Medicines Agency (EMA) Scientific Advice Working Party and Pharmacovigilance Risk Assessment Committee. He also serves on the Editorial Board of the journal Frontiers of Immunology.
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. Tatiana has recently been co-opted to the Board of Directors of the World Federation of Hemophilia as Lay Member.
Montreal, 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.
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.
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.
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.
Montreal, Canadá
Assad Haffar is currently the Medical and Humanitarian Aid Director at the World Federation of Hemophilia (WFH) based in Montreal, Canada. Dr Haffar earned his MD at the University of Damascus in Damascus, Syria. He subsequently studied at the London School of Hygiene and Tropical Medicine, University of LONDON, London, UK, for his Master of Science in occupational medicine and at the University of Environmental and Occupational Health in Kitakyushu City, Japan, for his Diploma in industrial health.
During his career at the International Labor Organization (ILO), Geneva, Switzerland (1990–1995), he coordinated a large program to improve occupational health services and workers education in selected Middle East countries.
Dr Haffar has worked as coordinator for several projects related to occupational health at the Montreal Re-Adaptation Institute and the McGill University in Montreal, Canada.
Since Joining WFH in 2000, Dr Haffar has been involved in several activities, including twinning partnerships, symposia and workshops in the Middle East and African Region. In addition to leading the Humanitarian Aid Department responsible for the WFH Humanitarian Aid Program which is considered the largest global humanitarian aid program that channels clotting factor concentrates to countries where people with hemophilia have limited access to these products, Dr Haffar assisted many countries in the Middle East and African region in joining and becoming members of the WFH, in developing National Hemophilia Care Programs and in establishing the comprehensive care approach in different hemophilia treatment centers. Since becoming the WFH Medical Director in 2018, he designed and led many WFH medical activities.
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.
San Francisco, Estados Unidos
Dr. Kim is Vice President of Clinical Development at Star Therapeutics, Inc., a private biotech company based in South San Francisco, California, where he oversees the clinical development program for VGA039, an investigational monoclonal antibody directed against Protein S, within its subsidiary company, Vega Therapeutics. He joined Star in March 2022 after previously overseeing the clinical development program/trials for marzeptacog alfa at Catalyst Biosciences, ROCTAVIAN at BioMarin, and Hemlibra at Roche.
Prior to joining industry in 2014, Dr. Kim was an assistant professor at the University of California, San Francisco, where he cared for adolescent and adult persons with bleeding disorders in the hemophilia treatment center. He completed his clinical training in hematology/oncology at the University of California, Los Angeles; earned a master’s degree in policy analysis at the Pardee RAND Graduate School; and finished his undergraduate, medical school, and internal medicine residency training at Northwestern University."
Viena, Austria
Beyond his work at Takeda, he is Chairman of the Plasma Protein Therapeutics Association’s (PPTA) Pathogen Safety Steering Committee, a Steering Committee member of the Consortium on Adventitious Agent Contamination in Biomanufacturing (CAACB) as coordinated by the Massachusetts Institute of Technology (MIT), and an Associate Professor at the Institute of Virology, Medical University of Vienna. Dr. Kreil obtained a PhD in Biochemistry from the University of Vienna, Austria, and spent several years on post-doctoral research at the same institution focusing on antiviral immunology and specifically, the role of antiviral antibodies. He then joined Takeda (Immuno/Baxter/Baxalta/Shire), working in the area of Pathogen Safety of biopharmaceuticals, as well as research on virus antibodies and vaccines. He is well-published and has been a frequent international lecturer on the safety of biological medicinal products versus viruses and prions as well as antiviral defense, with particular emphasis on the role of virus antibodies/IVIG and vaccines.
Kingston, Canadá
David Lillicrap is a Professor in the Department of Pathology and Molecular Medicine at Queen’s University, Kingston, Canada. He is the recipient of a Canada Research Chair in Molecular Hemostasis. Dr. Lillicrap is a past member of the World Federation of Hemophilia’s (WFH) Medical Advisory Board and Chair of the WFH’s Research Committee. He is a past Chairman of the International Society for Thrombosis and Haemostasis’ Scientific and Standardization Committee, and a past member of the Council of ISTH. Dr. Lillicrap’s research interests are centered on molecular aspects of the hemostatic system with particular emphasis on the potential of molecular genetics and molecular biology to address questions relating to pathological hemostasis. The main foci of interest of his research group are the development and evaluation of novel therapies for hemophilia A, and characterization of the biology and pathobiology of von Willebrand factor.
Johannesburgo, Sudáfrica
Johnny Mahlangu is a Full Professor of Haematology and Academic Head of the Department of Molecular Medicine and Haematology in the Faculty of Health Sciences of the University of the Witwatersrand and the National Health Laboratory Service. He is also a Consultant Clinical Haematologist at the Charlotte Maxeke Johannesburg Academic Hospital. Johnny received his undergraduate and postgraduate training in science and medicine at the University of the Witwatersrand with haematology specialist and clinical haematology sub-specialist qualifications through the Colleges of Medicine of South Africa. His main area of research is novel therapies in bleeding disorders, in which he has served as Principal Investigator for a large number of international multicentre studies. He has published many peer-reviewed journal articles in high-impact journals, including the NEJM, Lancet, Blood and JTH. He has presented many oral talks and poster abstracts at national and international scientific meetings. His academic citizenship includes membership in many national and international Scientific Committees.
Sheffield, Reino Unido
Professor Michael Makris MD, is an Emeritus Professor of Haemostasis and Thrombosis at the University of Sheffield in the UK. He is a past president of the European Association for Haemophilia and Allied Disorders (EAHAD).
Professor Makris is the project lead for the EUHASS bleeding disorder adverse event reporting scheme in Europe.
He is Editor in Chief of the journal of Research and Practice in Thrombosis and Haemostasis and is on the editorial board of the British Journal of Haematology, Journal of Thrombosis and Haemostasis, Seminars in Thrombosis and Haemostasis, and Blood Transfusion.
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.
Zagreb, Croacia
Marko Marinić, PhD, scientific advisor at the Ivo Pilar Institute of Social Sciences in Zagreb, Croatia - research area: quality of life of people with disabilities, quality of life of people with rare diseases, and bioethical issues (the topic of his doctoral dissertation was about the value of human life in contemporary society). Assistant professor at the University of Zagreb, leader or collaborator on numerous scientific projects, author of three books and more than 60 scientific papers, book chapters, congress presentations, etc. Person with severe hemophilia A with inhibitors, president of the Croatian Haemophilia Society since 2017, and since 2022 a member of the Board of Directors of the World Federation of Hemophilia.
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.
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.
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.
Filadelfia, Estados Unidos
Ben Samelson-Jones, MD, PhD is Assistant Professor of Pediatrics and the University of Pennsylvania and a pediatric hematologist at The Children's Hospital of Philadelphia (CHOP). He provides medical care for children with blood diseases with a special interest in the children with hemophilia. He is the Associate Director of the Clinical In Vivo Gene Therapy program at CHOP, a member of the Raymond G. Perelman Center for Cellular and Molecular Therapeutics, and faculty for Gene Therapy and Vaccine (GTV) Graduate Program. He is a member of the Editorial Board for the Journal of Thrombosis and Haemostasis and the Board of Directors of the Hemostasis and Thrombosis Research Society.
He is a principal investigator on clinical gene therapy trials for hemophilia A and hemophilia B and has translational laboratory focused on developing novel treatments for bleeding disorders. His laboratory is supported by the National Heart, Lung, and Blood Institute, the National Bleeding Disorders Foundation, as well as by a number of sponsored research agreements with biotech partners.
Atlanta, Estados Unidos
Dr. Sidonio graduated from UAB medical school, completed his pediatric residency at the University of Louisville and completed his fellowship at the University of Pittsburgh where he also obtained his Masters in Clinical Investigation. Dr. Sidonio has been the Director of Hemostasis and Thrombosis Clinical Operations at Emory University since 2014. Dr. Sidonio has studies focusing on quality of life and menstrual bleeding treatment in hemophilia carriers and women with low VWF and is the lead co-PI of the MOTIVATE ITI Study, Wilate prophylaxis study series, FEIBA SAFE study and VWD Prophylaxis Network study. He is a HFA medical advisor, medical advisor for FWGBD, ATHN chair and Chair of Women’s Health issues in ISTH SSC.
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.
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.
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).
Ann Arbor, Estados Unidos
Dr. Weyand is a native of Kansas City, Kansas and graduate of Northwestern University in Evanston, Illinois. She attended medical school at the University of Michigan and completed her pediatrics residency at the University of Washington/Seattle Children's Hospital. She then returned to the University of Michigan for pediatric hematology and oncology fellowship and subsequently stayed on as faculty. Clinically, she is interested in von Willebrand disease and young women and girls with bleeding or clotting disorders. She is co-director of a combined hematology/gynecology program and co-chair of the NHF working group to identify a national research blueprint to address the needs of this population. Her research interests are in women and girls with bleeding disorders, hormone provoked thrombosis, and von Willebrand disease. She was a member of the management panel for the latest ASH/ISTH/NFH/WFH VWD guidelines, a co-chair for the ISTH SSC on Women's Health, and Theme Lead for Women's Health for the ISTH 2025 meeting.
Campinas, Brasil
Dr. Gabriela Yamaguti-Hayakawa earned her medical degree and completed her residency training in Internal Medicine and Hematology at University of Campinas, Brazil. Dr. Yamaguti-Hayakawa received her PhD in Internal Medicine also at the University of Campinas. She now works as a clinical hematologist at Hemocentro UNICAMP, focusing mainly on hemostasis and bleeding disorders.
Tianjin, China (República Popular)
Dr. Renchi Yang is Professor and Head of Thrombosis and Hemostasis Center at Institute of Haematology and Blood Diseases Hospital, Chinese Academy of Medical Sciences (CAMS) and Peking Union Medical College (PUMC). Dr. Yang contributes extensively to clinical research and is involved in many clinical trials. He has published over 100 peer-reviewed publications and book chapters on bleeding disorders.
He is Steer Committee member of East Asia Hemophilia Forum and the Association for Hemophilia and Allied Disorders-Asia-Pacific (AHAD-AP). He is Vice Chairman of the Thrombosis and Hemostasis Society, China Medicine Education Association. He is also Standing Committee member of the Rare Diseases Society, Chinese Research Hospital Association. He is Chairman of Hemophilia Committee, China Alliance for Rare Diseases. He is Director of the National Hemophilia Registry Center, Chairman of the Hemophilia Treatment Center Collaborative Network of China, Chairman of National Hemophilia Cooperative Group. He is currently the translated edition (Chinese) editor of Haemophilia, the official journal of the World Federation of Hemophilia (WFH).
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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.
Apoye nuestra labor
Encuentre apoyo local
Solicite becas y subvenciones
Solicite ayuda humanitaria
Actividades de cabildeo
Ayuda humanitaria
Identificación y diagnóstico
Tratamiento y atención
Investigación y recolección de datos
Capacitación
Instrucción y aprendizaje electrónico
BÚSQUEDA
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.
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.
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.
Download these sample clauses to give to your legal advisor.
We understand if you prefer to remain anonymous, but we would be very honoured if you would let us know of your intentions so that we may thank you personally. We would also be happy to answer any questions you may have or give you additional information. Please contact Jennifer Laliberté at 514‑875‑7944 ext.2822 or [email protected].
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.
| 2012 | Piet de Kleijn Países Bajos |
| 2010 | Dr. Mammen Chandy India |
| 2008 | Dr. Man-Chiu Poon Canadá |
| 2006 | Dr. Norma de Bosch Venezuela |
| 2004 | Dr. Parttraporn Insarangkura Tailandia Dr. Carol K. Kasper Estados Unidos |
| 2022 | Ammán (Jordania) – Dublín (Irlanda) |
| 2021 | Addis Abeba (Etiopía) – Minneapolis (EE.UU.) y Teherán (Irán) – Milán (Italia) |
| 2020 | Aluva (India) – Newcastle (Reino Unido) |
| 2019 | Yogyakarta / Solo (Indonesia) – Utrecht (Países Bajos) |
| 2018 | Abidjan (Costa de Marfil) – Bruselas (Bélgica) |
| 2017 | Santa Cruz de la Sierra (Bolivia) – Buenos Aires (Argentina) |
| 2016 | Kampala (Uganda) – Londres (Reino Unido) |
| 2015 | Varna (Bulgaria) – Bonn (Alemania) |
| 2014 | Arequipa (Perú) – Los Ángeles (Estados Unidos) |
| 2013 | Davangere (India) – Liverpool (Reino Unido) Ludhiana (India) – Detroit (Estados Unidos) |
| 2012 | Hanói (Vietnam) – Melbourne (Australia) |
| 2011 | Manado (Indonesia) – Utrecht (Países Bajos) |
| 2010 | Delhi (India) – Winnipeg (Canadá) Yaoundé (Camerún) – Ginebra (Suiza) |
| 2009 | Chisinau (Moldovia) – Varsovia (Polonia) Colombo (Sri Lanka) – Vellore (India) |
| 2008 | Gaborone (Botswana) – Filadelfia (Estados Unidos) |
| 2007 | Vientiane (Laos) – Brest (Francia) Damasco (Siria) – Montpellier (Francia) |
| 2006 | Lima (Perú) – Fort Worth (Estados Unidos) |
| 2005 | Ereván (Armenia) – Minneapolis (Estados Unidos) Casablanca (Marruecos) – Caen (Francia) |
| 2004 | Beirut (Líbano) – Ginebra (Suiza) Santo Domingo (República Dominicana) – Caracas (Venezuela) |
| 2003 | El Cairo (Egipto) – Knoxville (Estados Unidos) |
| 2002 | Moscú (Rusia) – Liverpool (Reino Unido) Panamá – Valencia (España) |
| 2001 | Bangalore (India) – St. Louis (Estados Unidos) |
| 2000 | Pune (India) – Bradford (Reino Unido) |
| 1999 | Montevideo (Uruguay) – Buenos Aires (Argentina) Tianjin (China) – Calgary (Canadá) |
| 1998 | Plovdiv (Bulgaria) – Bonn (Alemania) |
| 1997 | Bogotá (Colombia) – Los Ángeles (Estados Unidos) Tartu (Estonia) – Estocolmo (Suecia) |
| 1996 | Timisoara (Rumanía) – Múnich (Alemania) Riga (Letonia) – Munster (Alemania) |
| 1995 | Klaipeda (Lituania) – Malmo (Suecia) |
| 1994 | Bratislava (Eslovaquia) – Tel Hashomer (Israel) |
| 2025 | Greig Blamey Canadá |
| 2023 | Nicholas Goddard Reino Unido |
| 2021 | Axel Seuser Alemania |
| 2019 | Dr. Adolfo Llinás Colombia |
| 2017 | Pamela Hilliard Canadá |
| 2015 | Kathy Mulder Canadá |
| 2013 | James Luck Estados Unidos |
| 2012 | Piet de Kleijn Países Bajos |
| 2011 | Dr. Lily Heijnen Países Bajos |
| 2010 | Dr. Horacio Caviglia Argentina |
| 2009 | Jerome D. Wiedel Estados Unidos |
| 2008 | Dr. Federico Fernández-Palazzi Venezuela |
| 2007 | Michael Heim Israel |
| 2006 | Brenda Buzzard Reino Unido |
| 2005 | Dr. Marvin Gilbert Estados Unidos |
| 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 Bélgica |
Asociación entre la cinética multisegmento del pie y el daño articular inducido por la sangre en pacientes adultos con artropatía hemofílica del tobillo |
| 2017 | Fabio Souza Brasil |
Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis |
| 2015 | SM Javd Mortazavi Irán |
Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure |
| 2013 | Lize F.D. van Vulpen Estados Unidos |
Una proteína de fusión de IL4 e IL10 es igualmente eficaz para proteger el cartílago del daño inducido por la sangre en comparación con los componentes |
| 2012 | Horacio Caviglia Argentina |
Cirugía de pseudotumor en pacientes con hemofilia A: resultados comparativos entre pacientes inhibidores y no inhibidores |
| 2011 | Nick Goddard Reino Unido y Monique van Meegeren Países Bajos |
La administración temprana de IL-4 e IL-10 previene el daño del cartílago inducido por la sangre in vitro |
| 2010 | Lydia Abad-Franch España |
Influencia de un protocolo de entrenamiento acuático en la reducción del riesgo de morbilidad y mortalidad cardiovascular en un hemofílico |
| 2009 | Sebastien Lobet Bélgica |
Impacto de la artropatía del tobillo con hemofilia en la discapacidad de la marcha: análisis de variables energéticas y mecánicas |
| 2008 | Jose Alberto Tlacuilo-Parra México |
Marcadores de rotación ósea y densidad mineral ósea en niños con hemofilia |
| 2007 | Natalie Jansen Países Bajos |
Capacidades protectoras de la interleucina-10 en el daño del cartílago inducido por la sangre |
| 2006 | Axel Seuser y E. Kusch Alemania |
Estudio multicéntrico del resultado ortopédico de las extremidades inferiores en 249 niños con hemofilia |
| 2005 | Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders Países Bajos |
Lista de actividades para la hemofilia: desarrollo final y validación de un cuestionario de autoevaluación específico para hemofilia sobre las capacidades funcionales |
| 2004 | Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber Países Bajos |
La radiosinoviortesis con YTTRIUM-90 da como resultado efectos directos adversos sobre el cartílago: un estudio in vitro en humanos |
| 2003 | Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman Alemania |
¿Cómo aconsejar a los jóvenes hemofílicos que encuentren el deporte adecuado? Un algoritmo nuevo y seguro |
| 2002 | James Luck, Jr. y Mauricio Silva Estados Unidos |
Revisión a largo plazo de la artroplastia total de rodilla |
| 2001 | Federico Fernández-Palazzi Venezuela |
Clorhidrato de oxitetraciclina: un nuevo material para las órtesis sinoviales químicas |
| 2000 | Horacio Caviglia Argentina |
Pseudotumores |
| 1999 | William J. Ribbans y J.L. Hicks Reino Unido |
Comunicación y cooperación para el nuevo milenio: el futuro del comité musculoesquelético en el siglo XXI |
| 1998 | Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero Colombia |
La sinoviortesis de fosfato crómico sin restricción de edad debería ser la primera opción de tratamiento para la sinovitis hemofílica activa crónica |
Los resultados de interés recolectados en el RMTC abarcan características demográficas, resultados médicos y relacionados con el tratamiento, resultados de la carga de la enfermedad, y resultados reportados por los pacientes.
El RMTC incluye cinco escalas funcionales (en inglés) como parte de su conjunto de datos ampliados:
El conjunto de datos mínimo (CDM) es un grupo de datos demográficos, sobre diagnóstico, síntomas y tratamiento que se recolecta de los pacientes que participan en el RMTC.
El conjunto de datos ampliado (CDA)es un grupo de datos más grande, con mayores detalles que el CDM, que abarca preguntas sobre datos demográficos, diagnóstico, síntomas, tratamiento y carga de la enfermedad de los pacientes. Los centros de tratamiento de hemofilia pueden utilizar el CDA para recolectar información de pacientes que participan en el RMTC. El conjunto de datos ampliado (CDA) del RMTC se agregó a la base de datos en marzo del 2019.
Nationwide Children’s Hospital
Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston
Lifespan Orthopaedic Hemophilia Treatment Center at Luskin Orthopedic Institute for Children
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
Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital
Hospital Universitario La Paz
Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital
Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital
Singapore General Hospital Haemophilia Treatment Clinic
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
National Institute of Immunohaematology (ICMR) and KEM Hospital
Christian Medical College, Vellore
Paris Haemophilia Centre (Necker (N) and Kremlin Bicêtre (KB) Hospitals)
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)
Frank Schnabel, un hombre de negocios canadiense con hemofilia A grave, fundó la FMH en 1963. Schnabel estaba convencido de que las organizaciones de pacientes podían ser mucho más eficaces, y hacer más para representar los intereses de las personas con trastornos de la coagulación, si trabajaban unidas. El primer Congreso de la FMH se realizó en Copenhague, Dinamarca, el 25 de junio de 1963, y en él participaron representantes de 12 países. Actualmente, la FMH y su red mundial de organizaciones nacionales miembros (ONM) representan los intereses de personas con hemofilia y otros trastornos de la coagulación hereditarios en 152 naciones.
Air Canada
Air France y 
KLM
United