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Fonds de secours pour la COVID-19

Les organisations nationales membres déjà inscrites à d’autres programmes et initiatives de la FMH sont admissibles au Fonds de secours pour la COVID-19, sous réserve que les activités proposées dans le projet soumis ne fassent pas double emploi avec d’autres programmes en cours. Toutes les activités et tous les projets proposés doivent directement répondre aux besoins des organisations nationales membres et de la communauté concernée par les troubles de la coagulation consécutifs à la pandémie COVID-19, tels que :

  • Les logiciels, le matériel informatique et/ou l’équipement bureautique et la connectique nécessaires pour dispenser des formations ou des actions de sensibilisation en ligne, ou avoir accès à ces activités
  • Les coûts de communication visant à impliquer et sensibiliser les membres de la communauté
  • Les coûts additionnels permettant aux personnes atteintes d’un trouble de la coagulation d’accéder aux traitements et aux soins. Ces coûts comprennent par exemple le remboursement des frais d’hébergement et/ou de transport pour l’accès des personnes à un centre de traitement ou des services médicaux, si cet accès leur est par ailleurs impossible à cause des restrictions causées par la pandémie.
  • Les frais de livraison des médicaments vers d’autres villes ou vers le domicile des patients lorsqu’il ne leur est pas possible d’y accéder autrement à cause des restrictions induites par la pandémie
  • L’achat par les organisations nationales membres d’équipement de protection individuelle contre la COVID-19 (masques et/ou visières et gants) destiné aux équipes et bénévoles des organisations nationales membres, aux personnes atteintes de troubles de la coagulation, ainsi qu’aux professionnels de santé qui traitent les patients, afin de réduire le risque d’exposition à la COVID-19

CRITÈRES DE SÉLECTION

Le Groupe de travail chargé de l’allocation des crédits du Fonds de secours pour la COVID-19 prend la décision d’accorder les fonds, selon les critères suivants :

  • Les projets doivent directement répondre à la situation liée à la COVID-19.
  • Les projets doivent avoir des objectifs S.M.A.R.T. clairement définis (spécifiques, mesurables, atteignables, réalistes et temporels).
  • Les projets doivent prévoir des approches créatives et innovantes pour s’adapter à la situation en cours.
  • Les projets doivent être financièrement équilibrés.

BÉNÉFICIAIRES DU FONDS DE SECOURS POUR LA COVID-19

SOUTIENS

Tous nos remerciements aux organisations nationales membres suivantes pour leur généreux soutien au Fonds de secours pour la COVID-19 :

Fundación de la Hemofilia (Argentina)
Hemophilia Society of Bangladesh
Sociedad Chilena de la Hemofilia
Liga Colombiana de Hemofilico
Asociación Costarricense de Hemofilia (ASOHEMO)
Danish Hemophilia Society
Egyptian Hemophilia Society
Association française des hémophiles
Guyana Hemophilia Society
Hemophilia Federation (India)
Irish Haemophilia Society Ltd.
Israeli Hemophilia Association – ALEH
National Hemophilia Network of Japan
Korea Hemophilia Foundation
Malta Bleeding Disorders Society (MBDS)

Haemophilia Association of Mauritius (HAM)
Haemophilia Foundation of Nigeria
Fundación Panameña de Hemofilia
Egyptian Hemophilia Society
Association française des hémophiles
Guyana Hemophilia Society
Association Sénégalaise des Hémophiles
Swiss Hemophilia Society
National Hemophilia Foundation of Thailand
Society for Inherited & Severe Blood Disorders
Hemoophilia Society of Turkey
UK Haemophilia Society
National Hemophilia Foundation
Asociación de Hemofílicos del Uruguay

Le saviez-vous ?

Les lignes directrices de la FMH pour la prise en charge de l’hémophilie fournissent des conseils et des recommandations pratiques actualisés sur le diagnostic et la prise en charge de l’hémophilie.

Rester informé

Restez informé des toutes dernières actualités de la communauté des troubles de la coagulation, des avancées médicales aux événements incontournables.

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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.

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

Notre histoire

La FMH a été créée en 1963 par Frank Schnabel, un homme d’affaires canadien atteint d’hémophilie A sévère. Il était convaincu que les organisations de patients pouvaient être beaucoup plus efficaces – et mieux représenter les intérêts des personnes atteintes de troubles de la coagulation – si elles travaillaient ensemble. Le premier congrès de la FMH s’est tenu à Copenhague, au Danemark, le 25 juin 1963, et a réuni des représentants de 12 pays. Aujourd’hui, la FMH et son réseau mondial d’organisations nationales membres (ONM) représentent les intérêts des personnes atteintes d’hémophilie et d’autres troubles héréditaires de la coagulation dans 147 pays.

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

Ensembles de données du RMTC

Ensemble minimum de données du RMTC

L’Ensemble minimum de données du RMTC rassemble les informations de base (données démographiques, diagnostic, symptômes et traitements) collectées auprès des patients ayant accepté de participer au RMTC.

Ensemble élargi de données du RMTC

L’Ensemble élargi de données du RMTC correspond à un plus grand nombre d’informations collectées que celui de l’Ensemble minimum de données (données démographiques, diagnostic, symptômes, traitements et fardeau de la maladie). Disponible depuis mars 2019, l’Ensemble élargi de donnée du RMTC peut être utilisé par les Centres de traitement de l’hémophilie pour collecter des données plus détaillées sur les patients ayant accepté de participer au RMTC.

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.

Prix international du professionnel de santé bénévole - lauréats

Années précédentes

2012 Piet de Kleijn
Pays-Bas
2010 Dr Mammen Chandy
Inde
2008 Dr Man-Chiu Poon
Canada
2006 Dr Norma de Bosch
Venezuela
2004 Dr Parttraporn Insarangkura
Thailande

Dr Carol K. Kasper
États-Unis

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.

Éclairez tout en rouge - lieux emblématiques

Argentine

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

Vous connaissez un endroit qui va s’illuminer en rouge pour la Journée mondiale de l’hémophilie 2022 et qui ne figure pas sur la liste ? Veuillez nous transmettre la confirmation officielle de l’opération à l’adresse suivante : marcomm@wfh.org afin qu’elle soit intégrée à la liste.

Prix de la FMH pour service international exceptionnel - lauréats

Prix international d’excellence de la FMH - lauréats

Années précédentes

2012 Christine Lee
Royaume-Uni
2006 Dr Bruce Evatt
États-Unis

Prix spécial de la présidence - lauréats

Prix des jumelages de l’année

2019 Yogyakarta / Solo (Indonésie) – Utrecht (Pays-Bas)
2018 Abidjan (Côte d’Ivoire) – Bruxelles (Belgique)
2017 Santa Cruz de la Sierra (Bolivie) – Buenos Aires (Argentine)
2016 Kampala (Ouganda) – Londres (Royaume-Uni)
2015 Varna (Bulgarie) – Bonn (Allemagne)
2014 Arequipa (Pérou) – Los Angeles (États‑Unis)
2013 Davangere (Inde) – Liverpool (Royaume-Uni)
Ludhiana (Inde) – Detroit (États‑Unis)
2012 Hanoï (Vietnam) – Melbourne (Australie)
2011 Manado (Indonésie) – Utrecht (Pays-Bas)
2010 Delhi (Inde) – Winnipeg (Canada)
Yaoundé (Cameroun) – Genève (Suisse)
2009 Chisinau (Moldavie) – Varsovie (Pologne)
Colombo (Sri Lanka) – Vellore (Inde)
2008 Gaborone (Botswana) – Philadelphie (États-Unis)
2007 Vientiane (Laos) – Brest (France)
Damas (Syrie) – Montpellier (France)
2006 Lima (Pérou) – Fort Worth (États-Unis)
2005 Erevan (Arménie) – Minneapolis (États-Unis)
Casablanca (Maroc) – Caen (France)
2004 Beyrouth (Liban) – Genève (Suisse)
Saint-Domingue (République dominicaine) – Caracas (Venezuela)
2003 Le Caire (Égypte) – Knoxville (États-Unis)
2002 Moscou (Russie) – Liverpool (Royaume-Uni)
Panama - Valence (Espagne)
2001 Bangalore (Inde) – Saint-Louis (États-Unis)
2000 Pune (Inde) – Bradford (Royaume-Uni)
1999 Montevideo (Uruguay) – Buenos Aires (Argentine)
Tianjin (Chine) – Calgary (Canada)
1998 Plovdiv (Bulgarie) – Bonn (Allemagne)
1997 Bogota (Colombie) – Los Angeles (États-Unis)
Tartu (Estonie) – Stockholm (Suède)
1996 Timisoara (Roumanie) – Munich (Allemagne)
Riga (Lettonie) – Munster (Allemagne)
1995 Klaipeda (Lituanie) – Malmö (Suède)
1994 Bratislava (Slovaquie) – Tel Hashomer (Israël)

Outils d’évaluation des capacités fonctionnelles

Les informations pertinentes recueillies dans le Registre mondial des troubles de la coagulation (RMTC) comprennent des données démographiques, des résultats cliniques et thérapeutiques, des paramètres concernant le fardeau de la maladie et les résultats déclarés par les patients eux-mêmes.

Dans son questionnaire élargi de collecte de données, le RMTC intègre 5 outils d’évaluation des capacités fonctionnelles :

Prix Pietrogrande

2021 Axel Seuser
Allemagne
2019 Dr Adolfo Llinás
La Colombie
2017 Pamela Hilliard
Canada
2015 Kathy Mulder
Canada
2013 James Luck
États-Unis
2012 Piet de Kleijn
Pays-Bas
2011 Dr Lily Heijnen
Pays-Bas
2010 Dr Horacio Caviglia
Argentine
2009 Jerome D. Wiedel
États-Unis
2008 Dr Federico Fernández-Palazzi
Venezuela
2007 Michael Heim
Israël
2006 Brenda Buzzard
Royaume-Uni
2005 Dr Marvin Gilbert
États-Unis

Prix 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
Belgique
Association entre la cinétique multisegment du pied et les lésions articulaires induites par le sang chez les patients adultes atteints d’arthropathie hémophile de la cheville
2017 Fabio Souza
Brésil
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
États-Unis
Une protéine de fusion d’IL4 et d’IL10 est également efficace pour protéger le cartilage contre les dommages induits par le sang par rapport aux composants individuels
2012 Horacio Caviglia
Argentine
Chirurgie pseudotumorale chez les patients atteints d’hémophilie A: résultats comparatifs entre patients inhibiteurs et non inhibiteurs
2011 Nick Goddard
Royaume-Uni et
Monique van Meegeren
Pays-Bas
L’administration précoce d’IL-4 et d’IL-10 empêche les lésions cartilagineuses induites par le sang in vitro
2010 Lydia Abad-Franch
Espagne
Influence d’un protocole d’entraînement aquatique dans la réduction du risque de morbidité et de mortalité cardiovasculaires chez un hémophile
2009 Sebastien Lobet
Belgique
Impact de l’arthropathie de la cheville avec l’hémophilie sur l’incapacité de marche: analyse des variables énergétiques et mécaniques
2008 Jose Alberto Tlacuilo-Parra
Mexique
Marqueurs de la rotation osseuse et de la densité minérale osseuse chez les enfants atteints d’hémophilie
2007 Natalie Jansen
Pays-Bas
Les capacités de protection de l’interleukine-10 dans les dommages du cartilage induits par le sang
2006 Axel Seuser et E. Kusch
Allemagne
Etude multicentrique du résultat orthopédique des membres inférieurs chez 249 enfants atteints d’hémophilie
2005 Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders
Pays-Bas
Liste de contrôle des activités d’hémophilie: développement final et validation d’un questionnaire d’auto-évaluation spécifique à l’hémophilie sur les capacités fonctionnelles
2004 Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber
Pays-Bas
Radiosynoviorthesis avec YTTRIUM-90 résultats dans les effets directs défavorables sur le cartilage: une étude humaine in vitro
2003 Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman
Allemagne
Comment conseillez-vous aux jeunes hémophiles de trouver le bon sport? Un nouvel algorithme sûr
2002 James Luck, Jr. et Mauricio Silva
États-Unis
Examen à long terme d’arthroplastie totale du genou
2001 Federico Fernández-Palazzi
Venezuela
Chlorhydrate d’Oxytetracycline: un nouveau matériel pour les orthèses synoviales chimiques
2000 Horacio Caviglia
Argentine
Pseudotumeurs
1999 William J. Ribbans et J.L. Hicks
Royaume-Uni
Communication et coopération pour le nouveau millénaire: l’avenir du comité musculo-squelettique au XXIe siècle
1998 Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero
La Colombie
La synoviorthèse au phosphate chromique sans âge devrait être la première option de traitement pour la synovite hémophile chronique active

Prix Christine Lee Young pour la recherche

2020 Dr Ozlem Turan
Royaume-Uni
2017 Dr Heike Singer
University Hospital Bonn
Bonn, Germany
Prix Christine Lee Young de la meilleure synthèse de travaux :
“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
Christine Lee Young de la meilleure présentation de synthèse de travaux :
“Pharmacokinetic intervention to optimise FVIII prophylaxis: UKPK trial interim analysis”.
2014 Laurens Nieuwenhuizen
Pays-Bas (lauréat 2014)

Susanna Lovdahl
Suède (lauréat 2013)

Prix Inga Marie Nilsson

2016 Frederíca Cassis
Brésil
2014 Dr Magdy El Ekiaby
Egypte
2012 Dr Alok Srivastava
Inde
2010 Nichan Zourikian
Canada
2008 Dr Steve Kitchen
Royaume-Uni
2006 Kathy Mulder
Canada
2004 Dr Angus McCraw
Royaume-UniDr Brian Luke et Dr Man-Chiu Poon
Canada
2002 Anne Gilham
Afrique du Sud
2000 Dr Alok Srivastava
IndeDr Carol K. Kasper
États-Unis

Prix international de l’Association française des hémophiles – Prix Henri Chaigneau

2016 Professor Thierry Vandendroessche
Professor Marinee Chuah

Fonds Arosenius (Association suédoise des hémophiles)

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

Prix international du bénévolat Frank Schnabel - lauréats

Années précédentes

2012 Martha Patricia Monteros Rincon
Mexique
2010 Antonia Luque de Garrido
Venezuela
2008 Jean Michel Bouchez
France
2006 Yuri Zhulyov
Russie
2004 Ashok Verma
Inde

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Outils d'évaluation de la qualité de vie

Les informations pertinentes recueillies dans le Registre mondial des troubles de la coagulation (RMTC) comprennent des données démographiques, des résultats cliniques et thérapeutiques, des paramètres sur le fardeau de la maladie et la qualité de vie. La grille d’évaluation de la qualité de vie (EQ-5D-5L) est intégrée dans le questionnaire élargi de collecte de données du RMTC. Cet outil d’évaluation est disponible dans plus de 130 langues et sous différents formats.

Si vous souhaitez accéder à une autre version, veuillez nous adresser un courriel à l’adresse électronique suivante : wbdr@wfh.org.

Autres langues disponibles :

amharique
arabe (Algérie, Maroc, EAU)
anglais (Ghana, Inde, Jamaïque, Kenya, Nigéria, Philippines)
français (Algérie, Belgique, Maroc)
hongrois
malayalam
népalais
punjabi
russe (Ukraine)

serbe
espagnol (Argentine, Panama, Espagne, États-Unis)
swahili
tagalog
thaï
twi
ukrainien
urdu
vietnamien

Pour plus d’informations, rendez-vous sur : euroqol.org/eq-5d-instruments/eq-5d-5l-about.

Notre vision et notre mission

Notre vision d’un Traitement pour tous est celle d’un monde dans lequel toutes les personnes atteintes de troubles héréditaires de la coagulation ont accès aux soins, quels que soient leur trouble de la coagulation, leur sexe ou leur lieu de résidence. Notre mission est d’améliorer et de pérenniser la prise en charge des personnes atteintes de troubles héréditaires de la coagulation dans le monde entier.