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© 2023 World Federation of Hemophilia
No d’enregistrement : 108222050 RR 0001
Advocacy
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Research and data collection
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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 does not collect personally identifying information about you when you visit our site, unless you choose to provide such information to us. Providing such information is strictly voluntary. This policy is your guide to how we will handle information we learn about you from your visit to our website.
Throughout our website, we provide links to other servers which may contain information of interest to our readers. We take no responsibility for, and exercise no control over, the organizations, views, or accuracy of the information contained on other servers. When linking to the WFH, 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 [email protected] with the subject « Link request. »
All information, photographs, graphics, and other material on this website are protected by copyright. While users of this website may use the content for personal, non-commercial use, none of the content of this website can be modified, translated, transferred or sold, copied, reproduced, published, or distributed, in whole or in part, without the prior written consent of the WFH. 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 [email protected].
If you have suggestions on how to make the site more accessible, please contact us at [email protected].
Our website provides users the opportunity to opt-out of receiving communications from us through a special online form or via the communication they have received. You may, at all times, choose to receive which communications within the organization you can receive or none at all. You may also update your contact information previously provided to us via another online form.
If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you can contact us at [email protected].
The WFH 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.
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RECHERCHE
Téléchargez ici les fichiers de conception nécessaires à votre campagne !
Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico
Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital
Hospital Universitario La Paz
Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital
Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital
Singapore General Hospital Haemophilia Treatment Clinic
Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)
National Medical Research Center of Hematology of the Russian Academy of Medical Sciences
Van Creveldkliniek
University Medical Centre Utrecht
Nara Hemophilia Centre
Nara Medical University
National Hemophilia Center, Tel Hashomer
Sheba Medical Center
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
National Institute of Immunohaematology (ICMR) and KEM Hospital
Christian Medical College, Vellore
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)
International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University
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
Coming soon!
| 2012 | Christine Lee Royaume-Uni |
| 2006 | Dr Bruce Evatt États-Unis |
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.
The WFH USA does not collect personally identifying information about you when you visit our site, unless you choose to provide such information to us. Providing such information is strictly voluntary. This policy is your guide to how we will handle information we learn about you from your visit to our website.
Throughout our website, we provide links to other servers which may contain information of interest to our readers. We take no responsibility for, and exercise no control over, the organizations, views, or accuracy of the information contained on other servers. When linking to the WFH USA, we request that you ensure that there are no associated connections for commercial purposes. Any official use of the name WFH USA or the use of its logo needs to be approved by the WFH USA. If you have a link you’d like us to consider adding to our website, please send an email to [email protected] with the subject “Link request.”
All information, photographs, graphics, and other material on this website are protected by copyright. While users of this website may use the content for personal, non-commercial use, none of the content of this website can be modified, translated, transferred or sold, copied, reproduced, published, or distributed, in whole or in part, without the prior written consent of the WFH USA. To view a copy of the WFH USA’s permissions guidelines, click here.
The WFH USA encourages the dissemination of its information and welcomes proposals on the reprinting, redistribution, and translation of its materials. If you would like to publish information that you find on our website, please send your request to [email protected].
If you have suggestions on how to make the site more accessible, please contact us at [email protected].
Our website provides users the opportunity to opt-out of receiving communications from us through a special online form or via the communication they have received. You may, at all times, choose to receive which communications within the organization you can receive or none at all. You may also update your contact information previously provided to us via another online form.
If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you can contact us at [email protected].
The WFH USA has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH USA staff or falsely stating that they are associated with the WFH USA. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH USA, are fraudulent and come from outside of our organization.
If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH USA emails come from @wfhusa.org or @wfh.org).
We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH USA at [email protected] or call 1-877-417-7944.
| 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 : [email protected] afin qu’elle soit intégrée à la liste.
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.
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.
| 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 |
| 2020 | Aluva (Inde) – Newcastle (Royaume-Uni)) |
| 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) |
| 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 |
| 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 |
| 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 |
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 : [email protected].
amharique
arabe (Algérie, Maroc, EAU)
anglais (Ghana, Inde, Jamaïque, Kenya, Nigéria, Philippines)
français (Algérie, Belgique, Maroc)
hongrois
malayalam
népalais
punjabi
russe (Ukraine)
Pour plus d’informations, rendez-vous sur : euroqol.org/eq-5d-instruments/eq-5d-5l-about.
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 :
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.
