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Visite la página de Noticias de la FMH para saber más sobre los eventos y acontecimientos que marcan la diferencia actualmente.

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We are looking forward to seeing you in Buenos Aires and Kuala Lumpur!

On behalf of everyone at the WFH, thank you for being part of the WFH 2022 World Congress in Montreal, Canada.

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We look forward to seeing you soon at our next meeting in Buenos Aires in 2023, and at the WFH 2024 World Congress in Kuala Lumpur, Malaysia!

WFH 2022 World Congress

May 8 to 11, 2022

We’ve accomplished a lot this year, we need your help to continue strong.

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Also available in: English Français Español

Disclaimer

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.

Website privacy policy

The WFH 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.

Use of links

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, we request that you ensure that there are no associated connections for commercial purposes. Any official use of the name WFH or the use of its logo needs to be approved by the WFH. If you have a link you’d like us to consider adding to our website, please send an email to web@wfh.org with the subject «Link request.»

Use of text and images

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. To view a copy of the WFH’s permissions guidelines, click here.

The WFH 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 publications@wfh.org.

Accessibility

If you have suggestions on how to make the site more accessible, please contact us at web@wfh.org.

Opt-Out or Change Your Contact Information

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.

Questions about our policies

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 web@wfh.org.

Fraud Alert

Unauthorized solicitations – Warning

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 helpdesk@wfh.org or call +1 514-875-7944.

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Hemophilia Alliance

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.

Italy - Milan

Year of IHTC designation: 1972

Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Blood banking
  • Orthopedic care and surgery
  • Physiotherapy
  • Diagnostic assessment of platelet functional defects

Thailand - Bangkok

Year of IHTC designation: 1984

International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University

Areas of Specialty

  • Adult and pediatric hemostasis
  • Molecular genetics
  • Nursing
  • Dental care and surgery
  • Orthopedic care and surgery
  • Physiotherapy
  • Blood banking
  • Psychology and social services

Sweden - Malmö

Year of IHTC designation: 1976

Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and genetics
  • Nursing
  • Dental care and surgery
  • Orthopedic care and surgery
  • Blood banking (on request)

Spain - Madrid

Year of IHTC designation: 2018

Hospital Universitario La Paz

Areas of Specialty

  • Adult and pediatric hematology
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

Spain - Valencia

Year of IHTC designation: 1997

Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • Blood banking
  • Psychology and Social services

South Africa - Johannesburg

Year of IHTC designation: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Physiotherapy

Singapore - Singapore

Year of IHTC designation: 2002

Singapore General Hospital Haemophilia Treatment Clinic

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis
  • Nursing
  • Dental care
  • Orthopedic care (no surgeries)
  • Physiotherapy
  • Psychology

Senegal - Dakar

Year of IHTC designation: 2016

Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Blood banking
  • Physiotherapy

Russia - Moscow and St. Petersburg

Year of IHTC designation: 2010

National Medical Research Center of Hematology of the Russian Academy of Medical Sciences

Areas of Specialty

  • Adult hematology
  • Nursing
  • Orthopedic surgery

Netherlands - Utrecht

Year of IHTC designation: 1996

Van Creveldkliniek
University Medical Centre Utrecht

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hematology
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy/Occupational therapy

Japan - Nara

Year of IHTC designation: 1998

Nara Hemophilia Centre
Nara Medical University

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic care and surgery
  • Laboratory diagnosis and Molecular genetics
  • Physiotherapy

Israel - Tel Hashomer

Year of IHTC designation: 1993

National Hemophilia Center, Tel Hashomer
Sheba Medical Center

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic surgery
  • Nursing
  • Physiotherapy
  • Dental care
  • Laboratory diagnosis (not genetics)
  • Psychology

United States - Chapel Hill, North Carolina

Year of IHTC designation: 1972

University of North Carolina Hemophilia & Thrombosis Center

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis
  • Nursing
  • Physiotherapy/ Occupational therapy
  • Psychology/ Social services

United States - Columbus, Ohio

Year of IHTC designation: 2018

Nationwide Children’s Hospital

Areas of Specialty

  • Pediatric hematology services
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

United States - Houston, Texas

Year of IHTC designation: 2000

Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Blood banking
  • Physiotherapy/ Occupational therapy
  • Psychology/Social services

United States - Los Angeles, California

Year of IHTC designation: 1970

Orthopaedic Hemophilia Treatment Center

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Physical therapy
  • Psychology/Social services

United States - New York, New York

Year of IHTC designation: 1993

Mount Sinai School of Medicine
Mount Sinai Medical Center

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Molecular genetics
  • Social services

United States - Rochester, Minnesota

Year of IHTC designation: 1974

Mayo (Rochester) Comprehensive Hemophilia Center, and International Hemophilia Training Center (WFH)
Mayo Clinic/Foundation and Mayo Medical School

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Blood banking
  • Molecular genetics
  • Psychology/ Social services

United States - San Diego, California

Year of IHTC designation: 2018

Hemophilia & Thrombosis Treatment Center
University of California San Diego

Areas of Specialty

  • Adult hematology
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

India - Mumbai

Year of IHTC designation: 2000

National Institute of Immunohaematology (ICMR) and KEM Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Orthopedic care
  • Physiotherapy

India - Vellore

Year of IHTC designation: 2000

Christian Medical College, Vellore

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics with antenatal diagnosis
  • Nursing
  • Musculoskeletal management – physical and occupational therapy with physiatry
  • Orthopedic care and surgery
  • Blood banking
  • Dental care
  • Psychology/Social services
  • Antenatal diagnosis

France - Paris

Year of IHTC designation: 1972

Paris Haemophilia Centre (Necker (N) and Kremlin Bicetre (KB) Hospitals)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Dental care
  • Orthopedic care and surgery
  • Psychology and Social services

Egypt - Cairo

Year of IHTC designation: 2015

Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Molecular genetics
  • Blood banking
  • Physiotherapy

Canada - Toronto

Year of IHTC designation: 2018

University of Toronto Hemophilia Centres
St. Michael’s Hospital

Areas of Specialty

  • Adult hematology services
  • Pediatric hematology services
  • Physiotherapy/occupational therapy
  • Dental care
  • Orthopaedic care (no surgery)
  • Laboratory diagnosis
  • Nursing
  • Psychology/social services

Brazil - Campinas, SP

Year of IHTC designation: 2008

Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and molecular genetics
  • Nursing
  • Dentistry
  • Physiotherapy

Belgium - Brussels

Year of IHTC designation: 2013

Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis
  • Orthopedic care and surgery

Belgium - Leuven

Year of IHTC designation: 1972

Hemofiliecentrum Leuven, University of Leuven

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis (not genetics)
  • Nursing
  • Psychology
  • Social services
  • Orthopedic care and surgery

Austria - Vienna

Year of IHTC designation: 1972

Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology

Areas of Specialty

  • Adult hematology

Australia - Melbourne

Year of IHTC designation: 2005

Ronald Sawers Haemophilia Centre

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Dental care
  • Blood banking
  • Psychology
  • Social work

Argentina - Buenos Aires

Year of IHTC designation: 1974

Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)

Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)

Areas of Specialty

  • Adult and pediatric hematology
  • Physiotherapy
  • Dental care
  • Orthopaedic care and surgery
  • Laboratory diagnosis and genetic diagnosis
  • Nursing
  • Psychology
  • Social services

Nuestra historia

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 147 naciones.

United Kingdom - London

Year of IHTC designation: 1970

Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy/Occupational therapy
  • Molecular genetics
  • Psychology/Social services

United Kingdom - Manchester

Year of IHTC designation: 2008

Manchester Haemophilia Comprehensive Care Centre (Children’s and Adult’s)
Manchester Royal Infirmary and Manchester Children’s Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Molecular genetics
  • National Hemophilia database

United Kingdom - Oxford

Year of IHTC designation: 1972

Oxford Haemophilia Centre and Thrombosis Centre
Churchill Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Orthopedic care and surgery
  • Nursing
  • Molecular genetics
  • Physiotherapy/Occupational therapy

United Kingdom - Sheffield

Year of IHTC designation: 1992

Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics

Conjuntos de datos del RMTC

Conjunto de datos mínimo del RMTC

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.

Conjunto de datos ampliado del 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.

Hemophilia of Georgia

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.

Premio internacional de la FMH al voluntariado por la atención de la salud - receptores

AÑOS PASADOS

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

National Hemophilia Foundation

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.

Legacy Gift

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 jlaliberte@wfh.org.

Disclaimer

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.

Website privacy policy

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.

Use of links

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 info@wfhusa.org with the subject “Link request.”

Use of text and images

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 publications@wfh.org.

Accessibility

If you have suggestions on how to make the site more accessible, please contact us at info@wfhusa.org.

Opt-Out or Change Your Contact Information

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.

Questions about our policies

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 info@wfhusa.org.

Fraud alert

Unauthorized solicitations – Warning

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 info@wfhusa.org or call 1-877-417-7944.

Iluminarse de rojo - edificaciones

Argentina

Buenos Aires, Argentina Planetario
La Torre Monumental
Monumento Plaza Congreso
Palacio Lezama

Si supiera de alguna edificación no incluida en la lista que vaya a ¡Iluminarse de rojo! para el Día mundial de la hemofilia 2022 agradeceremos envíe la confirmación oficial de la edificación a marcomm@wfh.org, a fin de agregarla a la lista.

Premio internacional de la FMH por servicios destacados - receptores

Premio internacional de la FMH en reconocimiento a los logros de toda una vida - receptores

AÑOS PASADOS

2012 Christine Lee
Reino Unido
2006 Dr. Bruce Evatt
Estados Unidos

Premio del presidente de la FMH - receptores

Premios a los hermanamientos del año

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)

Escalas funcionales

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:

Premio Pietrogrande

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

Premio Henri Horoszowski

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
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

Premio Christine Lee a jóvenes investigadores

2020 Dra. Ozlem Turan
Reino Unido
2017 Dr. Heike Singer
University Hospital Bonn
Bonn, Germany
Premio Christine Lee a jóvenes investigadores por mejor presentación de artículo libre:
“Detection and localization of intracellular FVIII in IPS derived endothelial cells from three Hemophilia A (HA)-patients with null mutations”.
2017 Dr. Badle Saket
Clinical Research Fellow
Barts and the London School of Medicine and Dentistry
The Royal London Hospital Haemophilia Centre
London, United Kingdom
Premio Christine Lee a jóvenes investigadores por mejor presentación moderada de un poster:
“Pharmacokinetic intervention to optimise FVIII prophylaxis: UKPK trial interim analysis”.
2014 Laurens Nieuwenhuizen
Países Bajos (ganador 2014)

Susanna Lovdahl
Suecia (ganador 2013)

Inga Marie Nilsson Award

2016Frederíca Cassis
Brazil
2014Dr. Magdy El Ekiaby
Egypt
2012Dr. Alok Srivastava
India
2010Nichan Zourikian
Canada
2008Dr. Steve Kitchen
United Kingdom
2006Kathy Mulder
Canada
2004Dr. Angus McCraw
United Kingdom

Dr. Brian Luke and Dr. Man-Chiu Poon
Canada
2002Anne Gilham
South Africa
2000Dr. Alok Srivastava
India

Dr. Carol K. Kasper
United States

International Prize of the French Hemophilia Society—The “Henri Chaigneau” Prize

2016Professor Thierry Vandendroessche
Professor Marinee Chuah

El Fondo Arosenius (Sociedad Sueca de Hemofilia)

2022 Peter Lenting
2020 Steve Pipe
2018 Amy Shapiro
2017 Amy Shapiro
2016 Doctor Midori Shima

Premio internacional Frank Schnabel de la FMH - receptores

AÑOS PASADOS

2012 Martha Patricia Monteros Rincon
México
2010 Antonia Luque de Garrido
Venezuela
2008 Jean Michel Bouchez
Francia
2006 Yuri Zhulyov
Rusia
2004 Ashok Verma
India

Encuentre un centro de tratamiento

Encuentre a una organización nacional miembro (ONM)

Escalas de calidad de vida

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 calidad de vida. La escala de calidad de vida, EQ-5D-5L, forma parte del conjunto de datos ampliados del RMTC. Está disponible en más de 130 idiomas y en diferentes formatos de administración.

Si desea un idioma diferente envíe un mensaje de correo electrónico a wbdr@wfh.org.

Los siguientes son otros idiomas disponibles:

amhárico
árabe (Argelia, Marruecos, EAU)
inglés (Ghana, India, Jamaica, Kenia, Nigeria, Filipinas)
francés (Argelia, Bélica, Marruecos)
húngaro
malayo
nepalí
punjabi
ruso (Ucrania)

serbio
español (Panamá, España, Estados Unidos)
swahili
tagalo
tailandés
twi
ucraniano
urdu
vietnamita

Si desea más información visite https://euroqol.org/eq-5d-instruments/eq-5d-5l-about/.

Nuestra visión y misión

Nuestra visión de Tratamiento para todos es un mundo en el que todas las personas con trastornos de la coagulación hereditarios tengan acceso a la atención, sin importar su tipo de trastorno, su sexo o el lugar donde vivan. Nuestra misión es mejorar y preservar la atención para personas con trastornos de la coagulación hereditarios alrededor del mundo.