The WFH is pleased to announce that the fourth WFH Global Summit on Women and Girls with Bleeding Disorders (WGBD) will be held virtually on September 25 and 26, 2025 from 9:00 a.m. to 3:00 p.m. (EDT). This edition will include educational sessions targeted to people with bleeding disorders, their families and national member organization (NMO) advocates. It also offers sessions targeted to healthcare providers and other stakeholders.
This two-day virtual Global Summit on WGBD will serve as a platform:
Several topics will be discussed, including principles of comprehensive and multidisciplinary care and the importance of collaboration amongst healthcare providers. Iron deficiency and its impact on quality of life (QoL) for women and girls, bleeding of unknown cause, how to discuss female topics openly, how to approach the impact of cultural differences in patient management and data collection amongst others.
This two-day virtual summit will feature plenaries, educational sessions and panel discussions inviting the audience to submit questions and interact with the speakers.
All session times are listed in EDT.
Chair
Dawn Rotellini, Chair, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Chief Operating Officer, National Bleeding Disorders Foundation, United States
Opening remark
Cesar Garrido, President, World Federation of Hemophilia, Venezuela
WFH Women and Girls with Bleeding Disorders Initiative
Andreina Tovar, Head, Global Development, World Federation of Hemophilia, Canada
This session will dive into the principles of comprehensive and multidisciplinary care for women and girls with bleeding disorders, the comorbidities experienced by them and how a comprehensive approach can help have better health and quality of life outcomes. The session will also present examples of projects aiming to achieve this, their challenges and achievements in their journey. The session will also include the testimonials of women with bleeding disorders trying to have access to multidisciplinary care at their HTCs.
Chair
Roshni Kulkarni, Member, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Professor and Former Director, Michigan State University Centers for Bleeding and Clotting Disorders, United States
Comprehensive and multidisciplinary care for women and girls
Robert Sidonio, Pediatric Hematologist, Aflac Cancer and Blood Disorders, United States
Kelly Tickle, Pediatric Bleeding Disorder Nurse Practitioner, Children’s Healthcare of Atlanta, United States
Kalinda Woods, Assistant Professor and Distinguished Physician, Emory University School of Medicine Gynecology Lead / Obstetrician Gynecologist, Emory Center for Thrombosis and Hemostasis, United States
Personal experiences
Evelyn Grimberg, Volunteer, Dutch Hemophilia Society, The Netherlands
Abira Maheen, General Secretary and National Women Group Coordinator, Hemophilia Foundation Pakistan, Pakistan
Rebecca Schaffer, DDS, Diplomate, American Board of Orofacial Pain, United States
The impact of iron deficiency is not fully appreciated in hematology. We will discuss management and prevention strategies of anemia for women and girls with bleeding disorders. Initially, iron deficiency anemia can be so mild that it goes unnoticed. But as the body becomes more deficient in iron and anemia worsens, the signs and symptoms intensify and can have a devastating impact on the quality of life for a woman or a girl with a bleeding disorder.
Chair
Michelle Sholzberg, Division Head of Hematology, Medical Director of Coagulation Laboratory, Director of Hemequity Lab & Hematology-Oncology Clinical Research Group, St. Michael’s Hospital / Hematology Departmental Division Director, Alexandra Yeo Chair in Hematology, Associate Professor, University of Toronto, Canada
What are iron deficiency and anemia?
Michelle Sholzberg, Division Head of Hematology, Medical Director of Coagulation Laboratory, Director of Hemequity Lab & Hematology-Oncology Clinical Research Group, St. Michael’s Hospital / Hematology Departmental Division Director, Alexandra Yeo Chair in Hematology, Associate Professor, University of Toronto, Canada
What main symptoms can women and girls with bleeding disorders have?
Marlène Beijlevelt, Vice-chair, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Haemophilia and Research Nurse, Haemophilia Treatment Centre, Amsterdam University Medical Centre, The Netherlands
What can I do to have a better quality of life?
Paula James, Professor and Deputy Head, Department of Medicine, Division of Hematology, Queen’s University, Canada
Personal experiences
Shauna Adams, Member, Youth Leadership Advisory Committee, World Federation of Hemophilia, Australia
TBC
Shanthi Hegde, Public Health Professional and Patient Advocate / Board Member, Hemophilia Federation of America, United States
Eliza VanZweden, Formulation Scientist and Patient Advocate / Board Member, Hemophilia Foundation of Michigan, United States
This session will discuss the principles of self-advocacy and the importance of information and data to make your case heard. The presenters will also discuss tools that can help in this journey as well as strategies to present yourself as a patient and achieve better care.
Chair
Dawn Rotellini, Chair, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Chief Operating Officer, National Bleeding Disorders Foundation, United States
What is self-advocacy?
Yannick Collé, Member, WGBD Committee, World Federation of Hemophilia / President, Association française des hémophiles, France
Tips and tools on how to advocate for yourself
Tahira Zafar, Member, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Professor of Haematology, Consultant Haematologist & Director, Haemophilia Treatment Centre Rawalpindi, Pakistan
Key communication advice for women and girls with bleeding disorders
Amanda Brito del Pino, Member, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Volunteer, Hemophilia Association of Uruguay, Uruguay
Personal experiences
Paxton Mills, University Student, University of Richmond, United States
Anupama Pattiyeri, Member, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Doctor, Hemophilia Society Calicut Chapter, India
Noemy Esther Diaz-Burgos, Assistant Teaching Professor, Florida International University, United States
This session focuses on Bleeding Disorders of Unknown Cause (BDUC), offering insights into what BDUC means and how it affects access to care. It explores the challenges of seeking treatment without a formal diagnosis and shares personal experiences to highlight the emotional and advocacy aspects of living with unexplained bleeding. Participants will gain a deeper understanding of how to navigate care and communicate effectively in uncertain diagnostic situations.
Chair
Tahira Zafar, Member, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Professor of Haematology, Consultant Haematologist & Director, Haemophilia Treatment Centre Rawalpindi, Pakistan
What are bleeding disorders of unknown cause?
Nicola Curry, Associate Professor of Haematology, Oxford University, United Kingdom
How to talk about getting treatment without a diagnosis
Marlène Beijlevelt, Vice-chair, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Haemophilia and Research Nurse, Haemophilia Treatment Centre, Amsterdam University Medical Centre, The Netherlands
Personal experiences
Marlène Beijlevelt, Vice-chair, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Haemophilia and Research Nurse, Haemophilia Treatment Centre, Amsterdam University Medical Centre, The Netherlands
Peta Dixon, Trustee and Young Ambassador, The Haemophilia Society, United Kingdom
WFH Women and girls with bleeding disorders committee
This session explores the cultural and societal challenges that make it difficult to discuss female health topics openly. It highlights the importance of supportive family communication, especially around carrier status, menstruation, and intimacy. Through expert insights and a panel discussion, participants will gain tools to foster open, respectful dialogue within families and communities.
Chair
Patrick James Lynch, Co-Founder & Chief Executive Officer, Believe Limited, United States
Barriers women and girls with bleeding disorders face
Roshni Kulkarni, Member, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Professor and Former Director, Michigan State University Centers for Bleeding and Clotting Disorders, United States
Dads to daughters supporting conversations about carrier status and bleeding
Kathaleen Schnur, Clinical Social Worker, Hemophilia Center of Western Pennsylvania, United States
This is embarrassing… How to create a healthy space for conversations about intimacy for young women with bleeding disorders
Jane Portnoy, Social Worker, Ronald Sawers Haemophilia Centre, The Alfred, Australia
Panel discussion on overcoming barriers societies face in discussing female topics openly
Chatowa Naomi Kawonga, Medical Student, University of Zambia, Zambia
Tsute Mwale, Board Member, Haemophilia Foundation of Zambia & Zambia Childhood Cancer Foundation, Zambia
Noemy Esther Diaz-Burgos, Assistant Teaching Professor, Florida International University, United States
Daniel Hartmann, United States
Lauren Phillips, Member, WGBD Committee, World Federation of Hemophilia / Board Member, Youth, Haemophilia Foundation of New Zealand, New Zealand
Utilizing the five social determinants of health, global bleeding disorder nurses will identify the non-medical factors that influence health outcomes. These determinants refer to the conditions in which people are born, grow, live, work, and age — all of which have a significant impact on individual and community well-being. By recognizing and addressing these non-medical influences, bleeding disorder nurses around the world can contribute to more equitable and holistic care strategies that go beyond clinical interventions, ultimately improving health outcomes for women and girls living with bleeding disorders.
Chair
Marlène Beijlevelt, Vice-chair, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Haemophilia and Research Nurse, Haemophilia Treatment Centre, Amsterdam University Medical Centre, The Netherlands
Social determinants of health, African perspective
Cyrus Githinji Njuguna, Nurse, Moi Teaching and Referral Hospital / Secretary, Board of Directors, Kenya Hemophilia Association, Kenya
Social determinants of health, Asian perspective
Anjalin D’souza, Assistant Professor-selection Grade, Manipal College of Nursing, MAHE / Nurse Coordinator, HTC Kasturba Hospital Manipal, Karnataka, India
Social determinants of health, South American perspective
Marcela Ganzella Sisdelli, Registered Nurse, Hemocentro de Ribeirao Preto, Brazil
Personal experiences
Yujie Zuo, Huazhong University of Science and Technology, China
Wajiha Javaid, Finance Secretary, Hemophilia Foundation Pakistan, Pakistan
Nikole Scappe-Hagen, Manager of Education, National Bleeding Disorders Foundation, United States
This session will walk us through the initiatives that the WFH has launched to improve data collection for women and girls with bleeding disorders and explain step by step how national member organizations (NMOs) can initiate data collection efforts. The session will also highlight the importance of data collection for advocacy purposes and the use of WFH tools to do so. An overview of how women and girls with bleeding disorders are currently represented in the data will follow together with experiences from different countries on data collection, their use for advocacy and outcomes.
Chair
Donna Coffin, Director, Data and Research, World Federation of Hemophilia, Canada
WFH Global data collection initiatives
Donna Coffin, Director, Data and Research, World Federation of Hemophilia, Canada
What you need to know to initiate data collection
Ellia Tootoonchian, Data and Research Manager, World Federation of Hemophilia, Canada
What role can NMOs play in data collection?
Emna Gouider, Vice-president, National Member Organization, World Federation of Hemophilia, Tunisia
Where and how are women and girls with bleeding disorders represented in the data?
Roshni Kulkarni, Member, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Professor and Former Director, Michigan State University Centers for Bleeding and Clotting Disorders, United States
Nigerian experience
Megan Adediran, Executive Director, Haemophilia Foundation of Nigeria, Nigeria
Canadian experience
Sarah Ford, Chief Executive Officer, Canadian Hemophilia Society, Canada
During this session the WFH VP NMO will discuss the importance of community when it comes to raising awareness and advocating for women and girls with bleeding disorders and the key role of the NMO as a representative of that community. The session will present examples of services NMOs can offer to women and girls with bleeding disorders and include initiatives within the structure of the NMOs. A number of countries will present about the services they are providing to women and girls with bleeding disorders, how the NMO decided to implement these projects and their outcomes so far.
Chair
Amanda Brito del Pino, Member, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Volunteer, Hemophilia Association of Uruguay, Uruguay
NMOs and their role in supporting women and girls with bleeding disorders
Emna Gouider, Vice-president, National Member Organization, World Federation of Hemophilia, Tunisia
NMO experience: Kyrgyzstan
Aizat Aidarbekova, Member, Women and Girls with Bleeding Disorders Committee, World Federation of Hemophilia / Volunteer, Kyrgyz Hemophilia Society, Kyrgyzstan
NMO experience: Pakistan
Masood Fareed Malik, Chief Executive Officer, Hemophilia Foundation Pakistan, Pakistan
NMO experience: Australia
Suzanne O’Callaghan, Policy Research and Education Manager, Haemophilia Foundation Australia, Australia
NMO experience: Paraguay
Leticia Benítez, Medical Commission Member, ASOHEMO, Paraguay
Interpretation available in English, Spanish, French, Arabic, Russian, German, Portuguese, Chinese (Mandarin), Hindi and Urdu
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 September 25 and 26, 2025.
Please contact [email protected] for more registration information.
The WFH can offer events like the Global Summit on WGBD 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—including women and girls—are heard, recognized, and supported.
Your gift makes a difference. Please consider donating today at give.wfh.org
Meet the members of the WGBD Committee:
Chair
U.S.A.
Vice-chair
The Netherlands
Committee member
Kyrgyzstan
Committee member
Uruguay
Committee member
France
Committee member
U.S.A.
Committee member
India
Committee member
New Zealand
Committee member
Pakistan
The WGBD Committee would like to thank the WFH VWD Committee, the WFH Nurses Committee, and the WFH Psychosocial Committee for their support in developing the following sessions:
Gibsonia, United States
The Netherlands
Kyrgyzstan
Uruguay
France
U.S.A.
India
New Zealand
Pakistan
Interested in catching up on the latest webinars and educational resources by the WFH on women and girls with bleeding disorders? View recordings of select sessions on the WFH eLearning platform.
All sessions will be made available on demand for 90 days following the event.
The event will be in English and will feature AI interpretation in Spanish, French, Arabic, Russian, German, Portuguese, Chinese (Mandarin), Hindi, and Urdu.
Login information will be sent to all registered attendees on September 22, 2025.
Please contact [email protected] for more information.
The 4th WFH Global Summit on Women and Girls with Bleeding Disorders is supported by funding from:
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.
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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.
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.
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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.
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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.
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| 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 |
| 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) |
| 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
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)
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 151 nations.
