We are happy to announce a return to a fully in-person meeting next year at the WFH 2024 World Congress, to be held from April 21 to 24 in Madrid, Spain. The Congress will be most comprehensive international event on bleeding disorders next year, so if you are a person with a bleeding disorder, a family member, healthcare professional, researcher, policy maker, advocate, or industry member—the WFH 2024 World Congress is for you!
WFH 2024 World Congress
[email protected]
ORGANIZED BY:
World Federation of Hemophilia
HOSTED BY:
Federación Española de Hemofilia
By going to the WFH 2024 World Congress, you will be helping the WFH continue to deliver the programs and events that are so critical to our community, especially in countries that have limited resources. The event is a forum for participants to share knowledge and education, foster collaboration, and extend their network. It’s also a chance for WFH leadership to meet with representatives of various countries to discuss development activities.
People from all specialties and interests will be taking part in the Congress, including patients, hematologists, pediatricians, orthopedic surgeons, physiatrists, physiotherapists, dentists, nurses, social workers, psychologists, geneticists, laboratory technicians, researchers, scientists, policy makers, regulators, advocates, and industry members.
Participants can expect to be treated to a world-class program that will cover the very latest medical and multidisciplinary developments. There will also be five professional track sessions in the fields of dentistry, laboratory sciences, musculoskeletal care, psychosocial care, and nursing. The progress of WFH Programs will also be covered, including the World Bleeding Disorders Registry (WBDR), the Gene Therapy Registry (GTR), the Cornerstone Initiative, the VWD Initiative, the WFH Path to Access to Care and Treatment (PACT) Program and the Twinning Program. And, of course, a rich social calendar will help participants get the most out of their time in Madrid.
Read on to find out more about the WFH 2024 World Congress!
The WFH World Congress has been held every two years since 1965. This important event contributes to our mission to improve and sustain care for people with inherited bleeding disorders around the world.
The WFH General Assembly is responsible for making the final decision as regards to the selection of the WFH World Congress host city. The selection of the host city is an open process that supports the WFH mission of serving all our members—regardless of their geographic location. To fulfill this mandate, the Congress is hosted in a different region every two years.
The Recinto Ferial de IFEMA MADRID is a 200,000 m² world-class facility with 13 halls, 85 rooms, two convention centres and several outdoor areas. The North Convention Centre has an auditorium for 1,100 people and 18 additional rooms, while the South Convention Centre offers another auditorium with capacity for 600 people. There are also 45 small rooms located in the mezzanine of the halls and two catwalks.
Committees
WFH Staff
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Senior Director, Operations, WFH
Senior Manager, Exhibitions & Special Events, WFH
CEO, WFH
Vice-President, Finance, WFH
President, Federación Española de Hemofilia (Fedhemo) - host NMO
WFH President
Secretary General, Fedhemo
Manager, Fedhemo
Vice-President 1, Fedhemo
Manager, Scientific Program, WFH
Director, Congress & Meetings, WFH
Mr. Antonio José Almeida is the Senior Director of Operations at the World Federation of Hemophilia (WFH) in Montreal, Canada. He oversees and guides all key WFH general operation functions – Congress & Meetings, Finance & Administration, Information Technology, and Human Resources.
Previously, from March 2016 to June 2019 he was Director of Programs and Education and responsible for the planning, implementation, follow-up and evaluation of international health care development programs, as well as the delivery of medical education, training curricula, and the development of educational resources. He also supported the CEO in his work with corporate partners. From October 2008 to March 2016 he was Director of Programs and was also responsible for all WFH country programs, the Global Alliance for Progress (GAP) and Cornerstone Initiative programs.
Danielle is a seasoned Senior Congress and Meetings Manager with over 20 years of experience in the international meeting planning industry. With a proven track record of success, Danielle has developed strong communication skills and an ability to solve practical problems while thriving in a lively but pressured environment.
Her specialties include exhibit and sponsorship sales, floor plan development, virtual conferences, meeting logistics, project management, budget management, supplier selection and site inspections.
Danielle previously worked at the International Air Transport Association (IATA) in their events department, where she gained invaluable experience working with a high-profile organization in the industry.
With her extensive experience and unique skill set, Danielle is a valuable asset to any organization looking to execute successful and impactful events.
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.
Barry Flynn has been Vice-President, Medical, for the WFH since 2018. A father of three, Flynn was born with severe hemophilia A. He graduated with first class honours degree in Biochemistry from Liverpool University, became a Chartered Accountant (CA) soon thereafter and then completed an MBA with distinction from IMC in 1991. Flynn was an audit partner for EY for 21 years until his retirement in 2015. He is a qualified executive coach and mentor, and currently has non-executive director roles at the WFH, with Liverpool University, the UK Haemophilia Society and the Manchester Growth Company.
Daniel-Aníbal Garcia Diego holds a degree in Law from the University of Cantabria and is a practising lawyer at the Madrid Bar Association. He holds a Master's degree in Economic Analysis of Law and Public Policy from the Ortega y Gasset-UCM Institute and a Master's degree in Health Management and Planning for Health Managers from the UEM-SEDISA.
Author of several scientific communications in different national and international congresses in the field of haematology, haemostasis and health economics, he has participated as a speaker at numerous scientific meetings. In addition to being a member of scientific societies related to health and health management, he is a "Youth Fellow" of the World Federation of Haemophilia.
Linked to the associative movement since 2004, when he became an active member of the Cantabrian Haemophilia Association, he has held various positions within the Standing Committee of Fedhemo, and has been President since April 2015.
Since 2016 he has been Secretary of Organisation of COCEMFE Nacional and since 2018 he has also been President of FEACEM.
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.
He has been working in the world of associations and disability since 2001, when he became a member of the Board of Directors of the Haemophilia Association of Malaga (AMH). Malagueña de Hemofilia (AMH). In March 2011 he was elected President of the association. During this period, many advances were achieved in terms of coordination with the Haematology Department of the Regional University Hospital of Malaga and the of Malaga and the involvement of the members of the Board of Directors was encouraged, workers, volunteers and members. He is currently vice-president.
During 2012 he was a member of the COCEMFE's commission for organically disabled people in Malaga as coordinator. He is president of Malaga Inclusiva COCEMFE, President of the of the Association of people with Haemophilia and other congenital coagulopathies in Andalusia (ASPHA) and Andalusia (ASPHA) and member of the Sectorial Council of Accessibility and of the Sectorial Council of Social Welfare of the City Council of Malaga.
Since April 2014, he has held the position of Secretary General of the Spanish Federation of Haemophilia.
Diplomada en Trabajo Social por la Universidad de Salamanca; Post grado en RRHH por EAE Business School; Titulada Superior en Dirección de ONG y Experta en Gestión Asociaciones de Pacientes por la UNED. Trabajadora social Sanitaria con más de 16 años de experiencia en el movimiento asociativo, dedicada a la intervención social con casos grupos y comunidades.
Desde hace 10 años centrada en la dirección, gestión, incidencia política, coordinación y mediación con administraciones públicas en defensa de los derechos del paciente, actualmente ejerce como directora gerente en la Federación Española de Hemofilia.
Colabora con la Asociación Española de Trabajo Social y Salud de Madrid (AETSyS) y forma parte de la Comisión de Trabajo Social Sanitario del Colegio Oficial de Trabajadores Sociales de Madrid desde el 2021.
Participa como docente en programas formativos de la Universidad autónoma de Madrid, la Universidad complutense de Madrid y Fundación Humans. Profesora adjunta en el Máster de Trabajo social Sanitario de la Universidad de Comillas, Madrid.
Autora principal y coatura de artículos, guías para profesionales del tercer sector, estudios e investigaciones publicadas a nivel nacional e internacional relacionados con la importancia de las asociaciones de pacientes, discapacidad, ejercicio del trabajo social e impacto de la Covid 19 en enfermos crónicos.
Studies in Economics. She worked in the Galician Haemophilia Association (AGADHEMO) from 2009 to 2013 as project coordinator. Since 2013 she has been working at Combina Social, S.L., as a project technician.
She has been a member of the Board of Directors of AGADHEMO since 2004 as a member, later as Treasurer and currently as President. She has been a member of the Board of Board of COGAMI since 2011. She is a member of the Board of Directors of the Federation of Ourense DISCAFIS- COGAMI since 2005 and President since 2012. She is also a founding member and member of the Board of Directors of the Board of Directors of the Association of Women with Disabilities (ACADAR) since 2009.
In September 2017, she joined the Standing Committee of Fedhemo as a member, where she currently holds the position of vice-president.
More information coming soon!
Jeremias Rodriguez is a seasoned Meeting Planner Executive with over 20 years’ experience in leading, planning and executing Virtual and In-person Events, domestically and internationally, across a variety of businesses including Associations, PCOs and DMCs.
Jeremias leads the Congress and Meetings department at the World Federation of Hemophilia (WFH) where he provides organization-wide leadership, strategic guidance and direction relating to the effective planning and execution of WFH events, in-person and virtual, as well as other educational and informational meetings world-wide.
Previous to the WFH, Jeremias worked at the International Airports Association where he ran the Events department and he had previously held various management roles at leading Canadian, US and Mexican PCOs and DMCs including Tropical Incentives, Terramar Destinations, Amstar-Apple Vacations and Altima Concept.
© 2023 World Federation of Hemophilia
Charitable Registration No: 108222050 RR 0001
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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.
National Hemophilia Center, Tel Hashomer
Sheba Medical Center
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 Institute of Immunohaematology (ICMR) and KEM Hospital
Christian Medical College, Vellore
International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University
Paris Haemophilia Centre (Necker (N) and Kremlin Bicetre (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
Hemofiliecentrum Leuven, University of Leuven
Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology
Ronald Sawers Haemophilia Centre
Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)
Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)
Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital
Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital
Manchester Haemophilia Comprehensive Care Centre (Children’s and Adult’s)
Manchester Royal Infirmary and Manchester Children’s Hospital
Oxford Haemophilia Centre and Thrombosis Centre
Churchill Hospital
Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital
| 2012 | Christine Lee United Kingdom |
| 2006 | Dr. Bruce Evatt United States |
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 Hemophilia 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.
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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.”
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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.
University of North Carolina Hemophilia & Thrombosis Center
Nationwide Children’s Hospital
Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston
Orthopaedic Hemophilia Treatment Center
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
| 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 |
| 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) |
| 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 |
| 2021 | Baolai Hua Yangzhou College, Xuzhou Medical University |
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 |
| 2012 | Martha Patricia Monteros Rincon Mexico |
| 2010 | Antonia Luque de Garrido Venezuela |
| 2008 | Jean Michel Bouchez France |
| 2006 | Yuri Zhulyov Russia |
| 2004 | Ashok Verma India |
The outcomes of interest collected in the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and quality of life. The quality of life scale, EQ-5D-5L, is part of the WBDR extended data set. It is available in more than 130 languages and in different modes of administration.
If you would like a different language, please email us at [email protected].
Amharic
Arabic (Algeria, Morocco, UAE)
English (Ghana, India, Jamaica, Kenya, Nigeria, and the Philippines)
French (Algeria, Belgium, and Morocco)
Hungarian
Malayalam
Nepali
Punjabi
Russian (Ukraine)
Serbian
Spanish (Argentina, Panama, Spain, and the U.S.A)
Swahili
Tagalog
Thai
Twi
Ukrainian
Urdu
Vietnamese
For more information, please visit: euroqol.org/eq-5d-instruments/eq-5d-5l-about.
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.
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 147 nations.
