La Administración de Alimentos y Medicamentos de Estados Unidos (FDA por su sigla en inglés) aprobó el etranacogene dezaparvovec-drlb (HEMGENIX), la primera terapia génica de administración única para adultos con hemofilia B que reúnen los requisitos para recibirla. La terapia fue aprobada para el tratamiento de adultos con hemofilia B que actualmente utilizan terapia profiláctica con factor IX o que tienen un historial actual o previo de hemorragias que ponen en peligro la vida, o que han tenido episodios hemorrágicos espontáneos graves y repetidos.
Acompáñenos este diciembre para la continuación de nuestra serie de webinarios médicos educativos de vanguardia sobre temas globales relacionados con los trastornos de la coagulación. Este evento —el último del año— ofrecerá a los participantes la oportunidad de obtener más información práctica sobre trastornos de la coagulación.
Durante los días 27 y 28 de octubre de 2022, la Federación Mundial de Hemofilia (FMH) realizó la segunda edición de la Cumbre mundial sobre políticas y acceso a tratamiento (GPAS por su sigla en inglés). Este evento virtual de dos días estuvo dedicado a promover el diálogo y el intercambio de conocimientos con el propósito de identificar estrategias para preservar e impulsar la atención de los trastornos de la coagulación en un mundo pandémico en rápida evolución. El objetivo del evento fue ayudar a la comunidad a estar un paso más cerca de hacer posible una atención sustentable para las personas con trastornos de la coagulación en todos lados.
La Cumbre mundial abarcará el congreso internacional bienal de la FMH sobre temas musculoesqueléticos (MSK) e incluirá segmentos multidisciplinarios, médicos y sobre temas MSK, todos centrados en torno a personas con trastornos de la coagulación.
© 2022 World Federation of Hemophilia
Registro caritativo: 108222050 RR 0001
© 2022 World Federation of Hemophilia
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.
BÚSQUEDA
¡Descargue aquí los archivos gráficos de los materiales de la campaña!
Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico
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
National Hemophilia Center, Tel Hashomer
Sheba Medical Center
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
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)
Frank Schnabel, un hombre de negocios canadiense con hemofilia A grave, fundó la FMH en 1963. Schnabel estaba convencido de que las organizaciones de pacientes podían ser mucho más eficaces, y hacer más para representar los intereses de las personas con trastornos de la coagulación, si trabajaban unidas. El primer Congreso de la FMH se realizó en Copenhague, Dinamarca, el 25 de junio de 1963, y en él participaron representantes de 12 países. Actualmente, la FMH y su red mundial de organizaciones nacionales miembros (ONM) representan los intereses de personas con hemofilia y otros trastornos de la coagulación hereditarios en 147 naciones.
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
El conjunto de datos mínimo (CDM) es un grupo de datos demográficos, sobre diagnóstico, síntomas y tratamiento que se recolecta de los pacientes que participan en el RMTC.
El conjunto de datos ampliado (CDA)es un grupo de datos más grande, con mayores detalles que el CDM, que abarca preguntas sobre datos demográficos, diagnóstico, síntomas, tratamiento y carga de la enfermedad de los pacientes. Los centros de tratamiento de hemofilia pueden utilizar el CDA para recolectar información de pacientes que participan en el RMTC. El conjunto de datos ampliado (CDA) del RMTC se agregó a la base de datos en marzo del 2019.
¡Descargue aquí los archivos gráficos de los materiales de la campaña!
| Buenos Aires, Argentina | Planetario |
| La Torre Monumental | |
| Monumento Plaza Congreso | |
| Palacio Lezama |
Si supiera de alguna edificación no incluida en la lista que vaya a ¡Iluminarse de rojo! para el Día mundial de la hemofilia 2022 agradeceremos envíe la confirmación oficial de la edificación a [email protected], a fin de agregarla a la lista.
Coming soon!
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.
Los resultados de interés recolectados en el RMTC abarcan características demográficas, resultados médicos y relacionados con el tratamiento, resultados de la carga de la enfermedad, y resultados reportados por los pacientes.
El RMTC incluye cinco escalas funcionales (en inglés) como parte de su conjunto de datos ampliados:
| 2012 | Christine Lee United Kingdom |
| 2006 | Dr. Bruce Evatt United States |
| 2012 | Piet de Kleijn Países Bajos |
| 2010 | Dr. Mammen Chandy India |
| 2008 | Dr. Man-Chiu Poon Canadá |
| 2006 | Dr. Norma de Bosch Venezuela |
| 2004 | Dr. Parttraporn Insarangkura Tailandia Dr. Carol K. Kasper Estados Unidos |
| 2019 | Yogyakarta / Solo (Indonesia) – Utrecht (Países Bajos) |
| 2018 | Abidjan (Costa de Marfil) – Bruselas (Bélgica) |
| 2017 | Santa Cruz de la Sierra (Bolivia) – Buenos Aires (Argentina) |
| 2016 | Kampala (Uganda) – Londres (Reino Unido) |
| 2015 | Varna (Bulgaria) – Bonn (Alemania) |
| 2014 | Arequipa (Perú) – Los Ángeles (Estados Unidos) |
| 2013 | Davangere (India) – Liverpool (Reino Unido) Ludhiana (India) – Detroit (Estados Unidos) |
| 2012 | Hanói (Vietnam) – Melbourne (Australia) |
| 2011 | Manado (Indonesia) – Utrecht (Países Bajos) |
| 2010 | Delhi (India) – Winnipeg (Canadá) Yaoundé (Camerún) – Ginebra (Suiza) |
| 2009 | Chisinau (Moldovia) – Varsovia (Polonia) Colombo (Sri Lanka) – Vellore (India) |
| 2008 | Gaborone (Botswana) – Filadelfia (Estados Unidos) |
| 2007 | Vientiane (Laos) – Brest (Francia) Damasco (Siria) – Montpellier (Francia) |
| 2006 | Lima (Perú) – Fort Worth (Estados Unidos) |
| 2005 | Ereván (Armenia) – Minneapolis (Estados Unidos) Casablanca (Marruecos) – Caen (Francia) |
| 2004 | Beirut (Líbano) – Ginebra (Suiza) Santo Domingo (República Dominicana) – Caracas (Venezuela) |
| 2003 | El Cairo (Egipto) – Knoxville (Estados Unidos) |
| 2002 | Moscú (Rusia) – Liverpool (Reino Unido) Panamá – Valencia (España) |
| 2001 | Bangalore (India) – St. Louis (Estados Unidos) |
| 2000 | Pune (India) – Bradford (Reino Unido) |
| 1999 | Montevideo (Uruguay) – Buenos Aires (Argentina) Tianjin (China) – Calgary (Canadá) |
| 1998 | Plovdiv (Bulgaria) – Bonn (Alemania) |
| 1997 | Bogotá (Colombia) – Los Ángeles (Estados Unidos) Tartu (Estonia) – Estocolmo (Suecia) |
| 1996 | Timisoara (Rumanía) – Múnich (Alemania) Riga (Letonia) – Munster (Alemania) |
| 1995 | Klaipeda (Lituania) – Malmo (Suecia) |
| 1994 | Bratislava (Eslovaquia) – Tel Hashomer (Israel) |
| 2021 | Axel Seuser Alemania |
| 2019 | Dr. Adolfo Llinás Colombia |
| 2017 | Pamela Hilliard Canadá |
| 2015 | Kathy Mulder Canadá |
| 2013 | James Luck Estados Unidos |
| 2012 | Piet de Kleijn Países Bajos |
| 2011 | Dr. Lily Heijnen Países Bajos |
| 2010 | Dr. Horacio Caviglia Argentina |
| 2009 | Jerome D. Wiedel Estados Unidos |
| 2008 | Dr. Federico Fernández-Palazzi Venezuela |
| 2007 | Michael Heim Israel |
| 2006 | Brenda Buzzard Reino Unido |
| 2005 | Dr. Marvin Gilbert Estados Unidos |
| 2021 | Baolai Hua Yangzhou College, Xuzhou Medical University |
The effects of intra-articular injection of TNF-alpha Antagonists in treatment of haemophilic synovitis |
| 2019 | Maarten Eerdekens Bélgica |
Asociación entre la cinética multisegmento del pie y el daño articular inducido por la sangre en pacientes adultos con artropatía hemofílica del tobillo |
| 2017 | Fabio Souza Brasil |
Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis |
| 2015 | SM Javd Mortazavi Irán |
Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure |
| 2013 | Lize F.D. van Vulpen Estados Unidos |
Una proteína de fusión de IL4 e IL10 es igualmente eficaz para proteger el cartílago del daño inducido por la sangre en comparación con los componentes |
| 2012 | Horacio Caviglia Argentina |
Cirugía de pseudotumor en pacientes con hemofilia A: resultados comparativos entre pacientes inhibidores y no inhibidores |
| 2011 | Nick Goddard Reino Unido y Monique van Meegeren Países Bajos |
La administración temprana de IL-4 e IL-10 previene el daño del cartílago inducido por la sangre in vitro |
| 2010 | Lydia Abad-Franch España |
Influencia de un protocolo de entrenamiento acuático en la reducción del riesgo de morbilidad y mortalidad cardiovascular en un hemofílico |
| 2009 | Sebastien Lobet Bélgica |
Impacto de la artropatía del tobillo con hemofilia en la discapacidad de la marcha: análisis de variables energéticas y mecánicas |
| 2008 | Jose Alberto Tlacuilo-Parra México |
Marcadores de rotación ósea y densidad mineral ósea en niños con hemofilia |
| 2007 | Natalie Jansen Países Bajos |
Capacidades protectoras de la interleucina-10 en el daño del cartílago inducido por la sangre |
| 2006 | Axel Seuser y E. Kusch Alemania |
Estudio multicéntrico del resultado ortopédico de las extremidades inferiores en 249 niños con hemofilia |
| 2005 | Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders Países Bajos |
Lista de actividades para la hemofilia: desarrollo final y validación de un cuestionario de autoevaluación específico para hemofilia sobre las capacidades funcionales |
| 2004 | Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber Países Bajos |
La radiosinoviortesis con YTTRIUM-90 da como resultado efectos directos adversos sobre el cartílago: un estudio in vitro en humanos |
| 2003 | Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman Alemania |
¿Cómo aconsejar a los jóvenes hemofílicos que encuentren el deporte adecuado? Un algoritmo nuevo y seguro |
| 2002 | James Luck, Jr. y Mauricio Silva Estados Unidos |
Revisión a largo plazo de la artroplastia total de rodilla |
| 2001 | Federico Fernández-Palazzi Venezuela |
Clorhidrato de oxitetraciclina: un nuevo material para las órtesis sinoviales químicas |
| 2000 | Horacio Caviglia Argentina |
Pseudotumores |
| 1999 | William J. Ribbans y J.L. Hicks Reino Unido |
Comunicación y cooperación para el nuevo milenio: el futuro del comité musculoesquelético en el siglo XXI |
| 1998 | Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero Colombia |
La sinoviortesis de fosfato crómico sin restricción de edad debería ser la primera opción de tratamiento para la sinovitis hemofílica activa crónica |
| 2012 | Martha Patricia Monteros Rincon México |
| 2010 | Antonia Luque de Garrido Venezuela |
| 2008 | Jean Michel Bouchez Francia |
| 2006 | Yuri Zhulyov Rusia |
| 2004 | Ashok Verma India |
Los resultados de interés recolectados en el RMTC abarcan características demográficas, resultados médicos y relacionados con el tratamiento, resultados de la carga de la enfermedad, y calidad de vida. La escala de calidad de vida, EQ-5D-5L, forma parte del conjunto de datos ampliados del RMTC. Está disponible en más de 130 idiomas y en diferentes formatos de administración.
Si desea un idioma diferente envíe un mensaje de correo electrónico a [email protected].
amhárico
árabe (Argelia, Marruecos, EAU)
inglés (Ghana, India, Jamaica, Kenia, Nigeria, Filipinas)
francés (Argelia, Bélica, Marruecos)
húngaro
malayo
nepalí
punjabi
ruso (Ucrania)
serbio
español (Panamá, España, Estados Unidos)
swahili
tagalo
tailandés
twi
ucraniano
urdu
vietnamita
Si desea más información visite https://euroqol.org/eq-5d-instruments/eq-5d-5l-about/.
Nuestra visión de Tratamiento para todos es un mundo en el que todas las personas con trastornos de la coagulación hereditarios tengan acceso a la atención, sin importar su tipo de trastorno, su sexo o el lugar donde vivan. Nuestra misión es mejorar y preservar la atención para personas con trastornos de la coagulación hereditarios alrededor del mundo.
