Nous sommes heureux d’annoncer le retour, d’une rencontre entièrement en présentiel, lors du Congrès mondial 2024 de la FMH, qui se tiendra du 21 au 24 avril à Madrid, en Espagne. Le Congrès sera l’événement international le plus complet dédié aux troubles de la coagulation de l’année. Si vous êtes une personne atteinte d’un trouble de la coagulation, un membre de sa famille, un professionnel de santé, un chercheur, un décideur politique, un représentant associatif ou un membre de l’industrie pharmaceutique, le Congrès mondial 2024 de la FMH est fait pour vous !
Congrès mondial 2024 de la FMH
[email protected]
ORGANISÉ PAR :
Fédération mondiale de l’hémophilie
ORGANISATION HÔTE :
Federación Española de Hemofilia
En participant au Congrès mondial 2024 de la FMH, vous aiderez la FMH à poursuivre ses programmes et à organiser des événements, si importants pour notre communauté, en particulier dans les pays aux ressources limitées. Le Congrès constitue une plateforme qui permet aux participants de partager leurs connaissances et leur éducation, de favoriser la collaboration et de renforcer leur réseau. C’est également l’occasion pour les dirigeants de la FMH de rencontrer les représentants de différents pays pour discuter des activités de développement.
Ce sont des personnes de toutes spécialités et aux intérêts variés qui participeront au congrès, notamment des patients, des hématologues, des pédiatres, des chirurgiens orthopédiques, des physiatres, des physiothérapeutes, des dentistes, des infirmiers, des travailleurs sociaux, des psychologues, des généticiens, des techniciens de laboratoire, des chercheurs, des scientifiques, des décideurs politiques, des régulateurs, des défenseurs des droits et des membres de l’industrie pharmaceutique.
Les participants se verront proposer un programme d’envergure mondiale qui couvrira les dernières avancées médicales et multidisciplinaires. Il y aura également six sessions professionnelles dans les domaines de la dentisterie, des sciences de laboratoire, des soins musculosquelettiques, des soins psychosociaux, des soins infirmiers et des femmes et jeunes filles atteintes de troubles de la coagulation. Les progrès des programmes de la FMH seront également abordés, notamment le Registre mondial des troubles de la coagulation (RMTC), le Registre de la thérapie génique (RTG), l’Initiative pour les pays les moins avancés, le Programme d’action Willebrand, le Programme Parcours d’accès aux soins et au traitement (PACT) de la FMH et le programme de jumelage. Et, bien sûr, un riche calendrier social aidera les participants à tirer le meilleur parti de leur séjour à Madrid.
Lire la suite pour en savoir plus sur le Congrès mondial de la FMH 2024 !
Le Congrès mondial de la FMH se tient tous les deux ans depuis 1965. Cet événement central contribue à remplir notre mission visant à améliorer et à pérenniser les soins pour les personnes atteintes de troubles héréditaires de la coagulation dans le monde entier.
L’Assemblée générale de la FMH est chargée de décider de la ville qui accueillera le Congrès mondial de la FMH. La sélection de la ville hôte est un processus ouvert qui soutient la mission de la FMH de servir tous ses membres, quelle que soit leur situation géographique. Pour remplir cette mission, le Congrès est organisé dans une région différente tous les deux ans.
Le Centre des congrès IFEMA MADRID est une installation de niveau international de 200 000 m² comprenant 13 halls d’exposition, 85 salles, deux centres de convention et plusieurs espaces extérieurs. Le Centre de Convention Nord dispose d’un auditorium pouvant accueillir 1 100 personnes et de 18 salles supplémentaires, tandis que le Centre de Convention Sud offre un autre auditorium d’une capacité de 600 personnes. Il y a également 45 petites salles situées dans la mezzanine des halls et deux passerelles.
Le Congrès mondial 2024 de la FMH prend des mesures afin de rendre l’événement le plus écologique possible :
Comités
Personnel de la FMH
Tout afficher
Senior Director, Operations, WFH
Senior Manager, Exhibitions & Special Events, WFH
CEO, WFH
Vice-President, Finance, WFH
President, Federación Española de Hemofilia (Fedhemo) - host NMO
WFH President
Secretary General, Fedhemo
Manager, Fedhemo
Vice-President 1, Fedhemo
Manager, Scientific Program, WFH
Director, Congress & Meetings, WFH
Mr. Antonio José Almeida is the Senior Director of Operations at the World Federation of Hemophilia (WFH) in Montreal, Canada. He oversees and guides all key WFH general operation functions – Congress & Meetings, Finance & Administration, Information Technology, and Human Resources.
Previously, from March 2016 to June 2019 he was Director of Programs and Education and responsible for the planning, implementation, follow-up and evaluation of international health care development programs, as well as the delivery of medical education, training curricula, and the development of educational resources. He also supported the CEO in his work with corporate partners. From October 2008 to March 2016 he was Director of Programs and was also responsible for all WFH country programs, the Global Alliance for Progress (GAP) and Cornerstone Initiative programs.
Danielle is a seasoned Senior Congress and Meetings Manager with over 20 years of experience in the international meeting planning industry. With a proven track record of success, Danielle has developed strong communication skills and an ability to solve practical problems while thriving in a lively but pressured environment.
Her specialties include exhibit and sponsorship sales, floor plan development, virtual conferences, meeting logistics, project management, budget management, supplier selection and site inspections.
Danielle previously worked at the International Air Transport Association (IATA) in their events department, where she gained invaluable experience working with a high-profile organization in the industry.
With her extensive experience and unique skill set, Danielle is a valuable asset to any organization looking to execute successful and impactful events.
Alain Baumann is the CEO of the World Federation of Hemophilia (WFH) and has held this position since 2015. Alain brings with him a proven track record leading non-profit as well as for-profit healthcare organizations. Early on in his career, he worked for a major pharmaceutical company holding marketing and general manager positions. Within the non-profit sector he worked for the World Economic Forum as well as for the AO Foundation, a global non-profit organization focusing on education and research in orthopedic surgery.
Barry Flynn has been Vice-President, Medical, for the WFH since 2018. A father of three, Flynn was born with severe hemophilia A. He graduated with first class honours degree in Biochemistry from Liverpool University, became a Chartered Accountant (CA) soon thereafter and then completed an MBA with distinction from IMC in 1991. Flynn was an audit partner for EY for 21 years until his retirement in 2015. He is a qualified executive coach and mentor, and currently has non-executive director roles at the WFH, with Liverpool University, the UK Haemophilia Society and the Manchester Growth Company.
Daniel-Aníbal Garcia Diego holds a degree in Law from the University of Cantabria and is a practising lawyer at the Madrid Bar Association. He holds a Master's degree in Economic Analysis of Law and Public Policy from the Ortega y Gasset-UCM Institute and a Master's degree in Health Management and Planning for Health Managers from the UEM-SEDISA.
Author of several scientific communications in different national and international congresses in the field of haematology, haemostasis and health economics, he has participated as a speaker at numerous scientific meetings. In addition to being a member of scientific societies related to health and health management, he is a "Youth Fellow" of the World Federation of Haemophilia.
Linked to the associative movement since 2004, when he became an active member of the Cantabrian Haemophilia Association, he has held various positions within the Standing Committee of Fedhemo, and has been President since April 2015.
Since 2016 he has been Secretary of Organisation of COCEMFE Nacional and since 2018 he has also been President of FEACEM.
Cesar Garrido was born in Caracas, Venezuela. He has two sons, one of whom has hemophilia A, which was the impetus for him becoming a committed member of the bleeding disorders community—a commitment which began over two decades ago.
In 1996, Garrido became a member of the Venezuelan Association for Hemophilia (AVH). He has held a number of roles in that organization, including being a member of the Board of Directors and Treasurer and Project Manager. At the AVH, he has been key member of several endeavours, including the creation of new diagnostic laboratories in Venezuela, and campaigns for testing and diagnosis of people with hemophilia (PWH) in Venezuela and Latin America. He was also part of national programs which increased access to factor, developed outreach and identification campaigns, increased access to education, and set up regional medical workshops for PWH.
At the international level, Garrido was an Advisory Board member of the International Alliance Patient Organization (IAPO) and has been a member of HERO (Haemophilia Experiences, Results and Opportunities) since 2010. He was also a development manager for a strategic alliance of 27 countries from the Americas—called the Coalition of the Americas (CoA)— that was set up to influence public policies.
The WFH has been a big part of Cesar Garrido’s life since 1999. He was a member of the Board of Directors from 2002 to 2010 and was most recently lay member from 2014 until his election as President in 2020. He has held a number of important roles at the WFH, including chair of the Accreditation Committee, chair of the Hemophilia Organization Twinnings (HOT) Committee, co-chair of Capacity Building Committee, national member organization (NMO) Vice President, and member of the President’s Strategic Council.
He has been working in the world of associations and disability since 2001, when he became a member of the Board of Directors of the Haemophilia Association of Malaga (AMH). Malagueña de Hemofilia (AMH). In March 2011 he was elected President of the association. During this period, many advances were achieved in terms of coordination with the Haematology Department of the Regional University Hospital of Malaga and the of Malaga and the involvement of the members of the Board of Directors was encouraged, workers, volunteers and members. He is currently vice-president.
During 2012 he was a member of the COCEMFE's commission for organically disabled people in Malaga as coordinator. He is president of Malaga Inclusiva COCEMFE, President of the of the Association of people with Haemophilia and other congenital coagulopathies in Andalusia (ASPHA) and Andalusia (ASPHA) and member of the Sectorial Council of Accessibility and of the Sectorial Council of Social Welfare of the City Council of Malaga.
Since April 2014, he has held the position of Secretary General of the Spanish Federation of Haemophilia.
Diplomada en Trabajo Social por la Universidad de Salamanca; Post grado en RRHH por EAE Business School; Titulada Superior en Dirección de ONG y Experta en Gestión Asociaciones de Pacientes por la UNED. Trabajadora social Sanitaria con más de 16 años de experiencia en el movimiento asociativo, dedicada a la intervención social con casos grupos y comunidades.
Desde hace 10 años centrada en la dirección, gestión, incidencia política, coordinación y mediación con administraciones públicas en defensa de los derechos del paciente, actualmente ejerce como directora gerente en la Federación Española de Hemofilia.
Colabora con la Asociación Española de Trabajo Social y Salud de Madrid (AETSyS) y forma parte de la Comisión de Trabajo Social Sanitario del Colegio Oficial de Trabajadores Sociales de Madrid desde el 2021.
Participa como docente en programas formativos de la Universidad autónoma de Madrid, la Universidad complutense de Madrid y Fundación Humans. Profesora adjunta en el Máster de Trabajo social Sanitario de la Universidad de Comillas, Madrid.
Autora principal y coatura de artículos, guías para profesionales del tercer sector, estudios e investigaciones publicadas a nivel nacional e internacional relacionados con la importancia de las asociaciones de pacientes, discapacidad, ejercicio del trabajo social e impacto de la Covid 19 en enfermos crónicos.
Studies in Economics. She worked in the Galician Haemophilia Association (AGADHEMO) from 2009 to 2013 as project coordinator. Since 2013 she has been working at Combina Social, S.L., as a project technician.
She has been a member of the Board of Directors of AGADHEMO since 2004 as a member, later as Treasurer and currently as President. She has been a member of the Board of Board of COGAMI since 2011. She is a member of the Board of Directors of the Federation of Ourense DISCAFIS- COGAMI since 2005 and President since 2012. She is also a founding member and member of the Board of Directors of the Board of Directors of the Association of Women with Disabilities (ACADAR) since 2009.
In September 2017, she joined the Standing Committee of Fedhemo as a member, where she currently holds the position of vice-president.
Plus d’informations bientôt disponibles !
Jeremias Rodriguez is a seasoned Meeting Planner Executive with over 20 years’ experience in leading, planning and executing Virtual and In-person Events, domestically and internationally, across a variety of businesses including Associations, PCOs and DMCs.
Jeremias leads the Congress and Meetings department at the World Federation of Hemophilia (WFH) where he provides organization-wide leadership, strategic guidance and direction relating to the effective planning and execution of WFH events, in-person and virtual, as well as other educational and informational meetings world-wide.
Previous to the WFH, Jeremias worked at the International Airports Association where he ran the Events department and he had previously held various management roles at leading Canadian, US and Mexican PCOs and DMCs including Tropical Incentives, Terramar Destinations, Amstar-Apple Vacations and Altima Concept.
© 2025 World Federation of Hemophilia
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The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.
While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.
Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.
References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.
The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.
If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).
We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.
Recognizing that training women leaders ensures the diversity our community need to thrive; the Hemophilia Alliance has been a longtime supporter of the Susan Skinner Memorial Fund. They deepened their engagement with the global community through the establishment of the Travel Grant Program, which allows US-based multidisciplinary healthcare professionals the opportunity to attend WFH global training workshops. The wealth of experience and perspective attendees bring back home to their communities helps patients across the country. Their patience and support as we grappled with changing norms in these challenging times gave us the flexibility to meet our community’s needs with revamped programming.
Hemophilia of Georgia has stood with us for over three decades, playing an early role in distributing donated factor via the WFH Humanitarian Aid program. Our relationship has deepened over the years as they continued to support this program and came on board as a founding Chapter Challenge champion in 2016. Their belief in educating future leaders is clear in their investment in the Youth Leadership Workshops, which has led to the training of over 50 young adults. They also support workshops devoted to educating providers and patient leaders on how to collect and use data to advocate for better patient care. Their staff generously volunteer their time as trainers and as well as serving on various committees.
The National Bleeding Disorders Foundation helps advance our mission on several fronts. They inspire others to follow their lead as a founding champion of the NHF Chapter Challenge. Their commitment to equality of access is demonstrated in their support of the Cornerstone Initiative, which lays the foundation for care in the world's most underserved regions, as well as programs that aim to raise awareness and improve care of women with bleeding disorders and those with von Willebrand disease. We also benefit from their steadfast engagement with various programs including the WFH Twinning Program and their individual leaders’ contribution to our leadership and committees.
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.”
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If you have any questions about this privacy statement, the practices of this site, or your dealings with this website, you can contact us at [email protected].
The WFH USA has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH USA staff or falsely stating that they are associated with the WFH USA. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH USA, are fraudulent and come from outside of our organization.
If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH USA emails come from @wfhusa.org or @wfh.org).
We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH USA at [email protected] or call 1-877-417-7944.
| 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 |
| 2022 | Amman (Jordanie) – Dublin (Irlande) |
| 2021 | Addis Abeba (Éthiopie) – Minneapolis (États-Unis) et Téhéran (Iran) – Milan (Italie) |
| 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) |
| 2025 | Greig Blamey Canada |
| 2023 | Nicholas Goddard Royaume-Uni |
| 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 |
| 2025 | Shubhranshu S. Mohanty Inde |
Haemophilic pseudotumour – New improvised classification system and its outcome in 168 cases at a Tertiary care centre |
| 2021 | Baolai Hua Chine |
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 |
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 :
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.
Nationwide Children’s Hospital
Gulf States Hemophilia and Thrombophilia Center
University of Texas Health Science Center at Houston
Lifespan Orthopaedic Hemophilia Treatment Center at Luskin Orthopedic Institute for Children
Mount Sinai School of Medicine
Mount Sinai Medical Center
Mayo (Rochester) Comprehensive Hemophilia Center, and International Hemophilia Training Center (WFH)
Mayo Clinic/Foundation and Mayo Medical School
Hemophilia & Thrombosis Treatment Center
University of California San Diego
Katharine Dormandy Haemophilia Centre and Thrombosis Unit
Royal Free Hospital
Oxford Haemophilia and Thrombosis Centre
Churchill Hospital
Sheffield Haemophilia and Thrombosis Centre
Royal Hallamshire Hospital
International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University
Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital
Hospital Universitario La Paz
Haemostasis and Thrombosis Unit
Haematology Service, University and Polytechnic Hospital
Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital
Singapore General Hospital Haemophilia Treatment Clinic
Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)
National Medical Research Center of Hematology of the Russian Academy of Medical Sciences
Van Creveldkliniek
University Medical Centre Utrecht
Nara Hemophilia Centre
Nara Medical University
Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico
National Hemophilia Center, Tel Hashomer
Sheba Medical Center
National Institute of Immunohaematology (ICMR) and KEM Hospital
Christian Medical College, Vellore
Paris Haemophilia Centre (Necker (N) and Kremlin Bicêtre (KB) Hospitals)
Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University
University of Toronto Hemophilia Centres
St. Michael’s Hospital
Hemocentro – “Unidade de Hemofilia Cláudio Luiz Pizzigatti Corrêa”
Hemocentro Unicamp, University of Campinas
Haemostasis and Thrombosis Unit
Division of Haematology
Cliniques universitaires Saint-Luc
Medical University of Vienna
Department of Medicine I
Clinical Division of Hematology and Hemostaseology
Ronald Sawers Haemophilia Treatment Centre
Instituto Asistencial “Dr. Alfredo Pavlovsky”
(Fundación de la Hemofilia)
Instituto De Investigaciones Hematológicas “Dr. Mariano R. Castex” (IIHEMA
(Academia Nacional de Medicina)
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 152 pays.
Boîte à outils destinés aux réseaux sociaux du Congrès
Aidez‑nous à créer le buzz grâce à notre boîte à outils consacrés aux réseaux sociaux et à faire connaître le Congrès mondial 2024 de la FMH. Ensemble, nous avons le pouvoir de réinventer l’avenir des personnes atteintes de troubles de la coagulation. Partagez votre enthousiasme et faites passer le mot aux quatre coins du monde !
Matériel du congrès
Bannières
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Bannières
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Bannières
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