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Mini-Congress-Daily-April-22--morning-header

2024 Congress Daily morning edition: Monday, April 22

Good morning and welcome to day 1 of the WFH 2024 World Congress! Check in on the WFH News page daily in the mornings and evenings to learn about what not to miss today, and to get a recap of the key events that took place during the day.

También disponible en: English Français

Don’t miss the WFH inaugural plenary

Congress kicks off at 9:00 with the WFH inaugural plenary, which will include the President’s Address, “Embracing change for a brighter tomorrow”, by Cesar Garrido, and the VP Medical Address, “An assault on patients’ access to therapies: vigilance essential”, by Glenn Pierce, MD, PhD. The plenary will also feature the presentation of two volunteer awards: the President’s Award, and the WFH International Healthcare Volunteer Award. To find out more about the WFH inaugural plenary, have a look at the detailed program here.

Time: 9:00 to 9:45
Location: N103/104, 1st floor, North Convention Center

Joint plenary on safety: a first for our community

This special event features a first-time collaboration between the people with bleeding disorders (PWBD) and medical committees to address critical safety concerns in bleeding disorder care. The session aims to empower the community to take proactive measures to ensure that we learn from past experiences and advocate for safety in bleeding disorder care. Find out more about the plenary in the detailed program here.

Time: 9:45 to 10:45
Location: N103/104, 1st floor, North Convention Center

Earn your CME credits today!

The WFH 2024 World Congress is accredited for 32 CME credits by the European Board for Accreditation in Hematology (EBAH), an accreditation body supported and endorsed by the European Hematology Association (EHA). To ensure you get your credits, remember to scan your badge twice: once when you arrive, and once when you leave the conference centre at the end of each day. To find out more about CME credits at Congress, click here.

Scan your badge at one of two CME locations:

  • 1st floor of the North Convention Center
  • Registration desk in Exhibit Hall 9

You’re invited to the young researcher moderated poster sessions

Taking place in the morning and in the afternoon today during the coffee breaks, the young researcher moderated poster sessions are an opportunity for you to learn about the very latest developments happening today. Hear from today’s newest minds about the research that may one day transform life for PWBDs. One presenter will be selected to win the Christine Lee Young Researcher Award for best poster, awarded during the Closing Plenary on Wednesday.

Moderated poster sessions:

Time: 10:45 to 11:30 and 15:15 to 16:00
Location: Poster pods, Exhibit Hall 9

WFH Humanitarian Aid Program 10 year anniversary session taking place today

“WFH Humanitarian Aid Program: celebrating 10 years of partnerships and achievements” will take place today at 11:00. Over the last decade, the Program has had a major impact on PWDBS in emerging economies, including securing donations from multiple donors, enhancing education for specialists, and improving the quality of life of PWBDs. Join this session to get inspired and find out more about the Program.

Time: 11:00 to 11:20
Location: Presentation Theatre, Exhibit Hall 9

Drop by the WFH Resource Centre today

The WFH Resource Centre at Congress is your chance to learn about WFH programs, and learn more about the free educational content that is available. Drop by to chat with our friendly WFH staff and learn more about WFH resources and programs. We look forward to seeing you there!

WFH highlight session: Increasing access to treatment

This session will look at the current state of access to treatment across the globe. It will highlight key WFH strategies and initiatives designed to accelerate access to treatment for people with bleeding disorders worldwide, and will also cover the impact of WFH humanitarian aid, healthcare development and data collection programs. The session will also showcase experiences from several countries. Find out more about the session in the detailed program here.

Time: 11:30 to 12:30
Location:
N101/102, 1st floor, North Convention Center

Wide range of industry symposia on tab for day 1

Come to our industry symposia to find out more about the developments changing our field today. From the management of inhibitors, to gene therapy, health equity and prophylaxis, there’s a symposium for everyone! Click here to see the different sessions being offered.

Time: 12:45 to 13:45 and 18:30 to 19:30
Location: Exhibit Hall 9 in rooms 1, 2 and 3

Free demos at the WFH Resource Centre

Want to learn how to use the WFH Annual Global Survey (AGS), the WFH World Bleeding Disorders Registry (WBDR) or the WFH Shared Decision Making Tool (SDM) to the fullest? Head over to the WFH Resource Centre and take part in free demos taking place today!

WFH Annual Global Survey (AGS): 15:00 to 16:00
WFH World Bleeding Disorders Registry (WBDR): 13:00 to 14:00
WFH Shared Decision Making Tool (SDM): 14:45 to 15:15

Stay connected with the official Congress app

Access all on-site resources conveniently through our Congress app, including the program schedule, speaker information, floor plans, and much more!

  1. Download the Aventri Events app from the Apple App Store or the Google Play store
  2. Enter the Congress access code: 463419
  3. Login (case sensitive):
    • Username: The email address you used to register (all lowercase)
    • Password: Your last name (only capitalize the first letter)

WFH Twinning Event

Learn about the experiences of WFH national member organizations (NMOs) and hemophilia treatment centres (HTCs) involved in a twinning partnership, and celebrate outstanding twinning achievements with the presentation of the Twins of the Year awards at this event.

Time: 15:15 to 16:15
Location: Neptuno, 2nd floor, North Convention Center

Poster networking event tonight

Learn more about the work and research showcased in our poster gallery from the authors themselves! Join us for an evening of information sharing, networking, engaging conversations, and inspiring collaborative opportunities.

Time: 19:30 to 20:30
Location: Exhibit Hall 9, Poster Gallery

Registration open in exhibit hall

Haven’t registered for Congress yet? Online registration is closed, but in-person registration is still open. Head on to the registration desk in the exhibit hall. Our team will get you set up in no time.

Shuttle bus schedule

The WFH will be providing a shuttle service between the official WFH hotels and the IFEMA Convention Center on Congress days (April 21 to 24). Several shuttles will travel between the Meliá Castilla, Novotel Madrid Center, Hotel H10 Tribeca, Ilunion Alcalá Norte, Ilunion Atrium, Marriott Auditorium, and the RIU Plaza España. Shuttles will depart approximately every thirty minutes and will loop continuously throughout the morning and late afternoon. WFH 2024 Congress signs will be posted at all boarding sites identifying the location as a WFH Shuttle pick-up and drop-off site.

Day From Congress hotels From IFEMA
Sunday, April 21 7:00 to 9:00 17:00 to 21:30
Monday, April 22 7:00 to 9:00 17:00 to 21:00
Tuesday, April 23 7:00 to 9:00 17:00 to 19:00
Wednesday, April 24 7:00 to 9:00 17:00 to 19:00

Lastest News

WFH 2024 World Congress concludes on high note

The WFH 2024 World Congress has officially concluded! Held from April 21 to 24 in Madrid, Spain, the event attracted over 3,000 delegates from 135 countries. The Congress was the most comprehensive international event on bleeding disorders this year, and the first fully in-person event for the WFH since the WFH 2018 World Congress in Glasgow, Scotland....

Other Congress News

2024 Congress Daily morning edition: Tuesday, April 23

Good morning and welcome to Day 2 of the WFH 2024 World Congress! Check in on the WFH News page daily in the mornings and evenings to learn about what not to miss today, and to get a recap of the key events that took place during the day….

2024 Congress Daily morning edition: Sunday, April 21

Good morning and welcome to the WFH 2024 World Congress! Check in on this page daily in the mornings and evenings to learn about what not to miss, and to get a recap of the key events that took place during the day….

El Congreso Mundial 2024 está a la vuelta de la esquina

¡Luego de dos años de anticipación, el Congreso Mundial 2024 de la FMH por fin está aquí! En unos cuantos días, miles de visitantes se darán cita en Madrid a fin de participar en el evento internacional más completo para la comunidad de trastornos de la coagulación. Si aún no…

Nuevas sesiones de artículos libres agregadas al programa del Congreso

Faltan solo unas cuantas semanas para el Congreso Mundial 2024 de la FMH y tenemos el gusto de anunciar que se han agregado al programa diez nuevas sesiones de artículos libres. Estas sesiones destacarán los resúmenes con las mejores puntuaciones, presentados por expertos en la especialidad. Participe en estas sesiones…

Amplíe sus horizontes con los talleres gratuitos del Congreso Mundial 2024 de la FMH

El Congreso Mundial 2024 de la FMH arrancará el domingo 21 de abril de 2024 a las 8:00 a. m. Horario de verano de Europa Central (CEST), con más de diez talleres interactivos de desarrollo profesional que se ofrecerán gratuitamente a todos los asistentes inscritos. Estos talleres proporcionarán a los…

Las 5 principales razones para asistir al Congreso Mundial 2024 de la FMH

Si le interesa participar en la mayor reunión para la comunidad mundial de trastornos de la coagulación este año, no dude en asistir al Congreso Mundial 2024 de la FMH. En pocos meses daremos la bienvenida en Madrid, España, a personas de todo el mundo deseosas de conocer los avances…

Congreso Mundial 2024 de la FMH: ¡No se pierda a los ponentes!

¡Damos la bienvenida al 2024, año del Congreso Mundial 2024 de la FMH! En tan solo unos meses, la Federación Mundial de Hemofilia (FMH) recibirá a miles de delegados en Madrid, durante lo que será el mayor evento para nuestra comunidad este año. Los participantes podrán disfrutar de más de…

Conozca más acerca del Congreso Mundial 2024 de la FMH

¡Ya se publicó el programa del Congreso Mundial 2024 de la FMH! El Congreso de este año incluirá más de noventa horas de sesiones educativas, que abordarán temas médicos y de personas con trastornos de la coagulación (PCTC) e incluirán seis segmentos de desarrollo profesional. Puede dar un vistazo al…

Congreso Mundial 2024 de la FMH: Madrid, la vibrante capital de España

La Federación Mundial de Hemofilia (FMH) y la Federación Española de Hemofilia (Fedhemo) tienen el gusto de dar la bienvenida a la comunidad mundial de trastornos de la coagulación al Congreso Mundial 2024 de la FMH que tendrá lugar en Madrid, España, del 21 al 24 de abril del año…

Se amplía la fecha límite para presentar propuestas de resúmenes

Excelentes noticias para los investigadores que desean exponer su trabajo al mundo: la fecha límite a fin de presentar a consideración propuestas de resúmenes para el Congreso Mundial 2024 de la FMH se amplía hasta el 30 de noviembre de 2023, a las 11:59 p. m. ET….

Le extendemos una invitación oficial al Congreso Mundial 2024 de la FMH

A nombre de César Garrido, presidente de la Federación Mundial de Hemofilia (FMH), y de Daniel Aníbal García Diego, presidente de la Federación Española de Hemofilia (Fedhemo), le extendemos una invitación oficial al Congreso Mundial 2024 de la FMH que tendrá lugar en Madrid, España, del 21 al 24 de…

¡Es oficial! Ya están abiertas las inscripciones y el alojamiento para el Congreso Mundial 2024 de la FMH

Ya se abrieron oficialmente las inscripciones y el alojamiento para el Congreso Mundial 2024 de la FMH que tendrá lugar en Madrid, España, del 21 al 24 de abril. Nuestras competitivas cuotas de inscripción y múltiples opciones hoteleras facilitarán que usted participe en lo que será el mayor evento para…

¡La convocatoria para someter a consideración resúmenes para el Congreso Mundial 2024 de la FMH se abrirá pronto!

El año próximo, la Federación Mundial de Hemofilia (FMH) y la Federación Española de Hemofilia (Fedhemo) auspiciarán el Congreso Mundial 2024 de la FMH en Madrid, España, del 21 al 24 de abril. Este evento será la reunión más completa del año en nuestro campo, con más de 90 horas…

Conozca más acerca del Congreso Mundial 2024 de la FMH

El próximo será un año importante para la comunidad mundial de trastornos de la coagulación, ya que la Federación Mundial de Hemofilia (FMH) y la Federación Española de Hemofilia (Fedhemo) auspiciarán el Congreso Mundial 2024 de la FMH en Madrid, España, del 21 al 24 de abril. El evento será…

¡Marque su calendario! El Congreso Mundial 2024 de la FMH llegará a Madrid el próximo año

La Federación Mundial de Hemofilia (FMH) y La Federación Española de Hemofilia (Fedhemo) se complacen en dar la bienvenida a la comunidad mundial de trastornos de la coagulación al Congreso Mundial 2024 de la FMH que se llevará a cabo en Madrid, España, el próximo año, del 21 al 24…

El Congreso Mundial 2024 de la FMH tendrá lugar en Madrid

El día de hoy, durante una reunión extraordinaria de la asamblea general (AG) de la Federación Mundial de Hemofilia (FMH), se decidió el lugar en el que tendrá lugar el Congreso Mundial 2024 de la FMH. Tenemos el gusto de anunciar que Madrid, España, fue seleccionada como la ciudad para…

La FMH convocará a una reunión especial de su Asamblea General

Durante los últimos dos años, la pandemia de COVID-19 ha incidido de manera importante en la comunidad de trastornos de la coagulación, causando incluso la cancelación o postergación de eventos. Debido a estos cambios, ahora se hace necesario que la Federación Mundial de Hemofilia (FMH) convoque a una reunión especial…

Nueva ONM asociada: Safe Motherhood and Hemophilia Foundation The Gambia

El 7 de mayo de 2022, durante la reunión anual de la Asamblea General de la Federación Mundial de Hemofilia (FMH), la asociación Safe Motherhood and Hemophilia Foundation The Gambia (SMHF por su sigla en inglés) fue bienvenida como organización nacional miembro (ONM) asociada de la FMH. La SMHF es…

Ya está disponible el acceso gratuito al contenido A pedido del Congreso 2022

El Congreso Mundial 2022 de la FMH fue un éxito rotundo, con miles de asistentes de 145 países, quienes participaron tanto en persona, en Montreal, como de manera virtual. La FMH ahora tiene el gusto de ofrecerle acceso gratuito al contenido A pedido del evento….

Ekawat Suwantaroj cooptado al Consejo Directivo de la FMH

La Federación Mundial de Hemofilia (FMH) tiene el gusto de anunciar que Ekawat Suwantaroj ha sido cooptado como miembro lego del Consejo Directivo de la FMH, a partir del 26 de mayo de 2022 y hasta la próxima reunión anual de la Asamblea General de la FMH en 2024….

General Plenary: VP Medical address with Glenn Pierce

At the WFH 2022 World Congress in Montreal, Canada, Glenn Pierce, MD, PhD, Vice President Medical at the World Federation of Hemophilia (WFH), gave his plenary address, “Looking Forward with the View of Learnings of the Past”. In his presentation, Pierce addressed where we are, and where we need to…

Humanitarian Aid, A path to sustainable care

The WFH 2022 World Congress concluded today in Montreal. Many guests gathered for the farewell dinner in a comfortable setting that reflected the positive feeling and sense of camaraderie that was present for the whole Congress….

The challenge of evaluating and managing pain

Today, the session “The challenge of evaluating and managing pain” was given at the WFH 2022 World Congress. The event was chaired by Barbara Konkle, Research Director and Professor of Medicine at the Washington Center for Bleeding Disorders, U.S.A., and World Federation of Hemophilia medical board member. …

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

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

WFH Humanitarian Aid Program officially signs new contract with CSL Behring

In April, the WFH and WFH USA announced a new WFH Humanitarian Aid Program partnership with CSL Behring which included a donation of 500 million IUs of factor VIII in addition to the original 3-year commitment of 17 million IUs per year of factor VIII and IX….

Magdy El Ekiaby receives 2022 WFH International Healthcare Volunteer Award

Every two years, the World Federation of Hemophilia (WFH) recognizes the outstanding volunteers who generously share their time, expertise, and energy with the global bleeding disorders community. Their contributions help drive our progress towards the WFH vision of Treatment for All….

Today at the WFH 2022 World Congress – May 11

Welcome to day 4 of the WFH 2022 World Congress. Here are a few “must see” sessions we have curated for you today….

Hemophilia gene therapy: update on new country initiatives

Today, “Hemophilia gene therapy: update on new country initiatives” was held at the WFH 2022 World Congress in Montreal, Canada. The talk was chaired by Alok Srivastava, Professor at the Department of Hematology – Christian Medical College, Vellore, India, and covered gene therapy developments at the country level. Gene therapy…

Free paper session: Oral health

The WFH 2022 World Congress in Montreal, Canada today held a session called “Free paper session: Oral health”….

Memorial art: remembering the past, changing the future

What role does the memorialization of tragedy play in healing? What roles do story-based memorials offer that names-based memorials can’t? Some of these questions were explored today at the WFH 2022 World Congress….

Perspectives on curing hemophilia

“Perspectives on curing hemophilia” was held at the WFH 2022 World Congress in Montreal, Canada….

Plenary: Gene therapy – are we ready now?

Hemophilia therapy has evolved from rudimentary transfusion-based approaches to an unprecedented level of innovation with the potential of a functional cure brought by gene therapy….

Roche extends commitment to WFH Humanitarian Aid Program

The World Federation of Hemophilia (WFH) and WFH USA are pleased to announce that Roche will extend its commitment to the WFH Humanitarian Aid Program until the end of 2028….

Humanitarian Aid, A path to sustainable care

At the WFH 2022 World Congress in Montreal, Canada, the many successes of the WFH Humanitarian Aid Program were covered in the session, “Humanitarian Aid, A path to sustainable care”. The event was chaired by Glenn Pierce, MD, PhD, Vice President Medical, World Federation of Hemophilia (U.S.A). …

Don’t miss: WFH Twinning event to celebrate long lasting partnerships

The World Federation of Hemophilia (WFH) Twinning Program creates collaborative partnerships between hemophilia treatment centres (HTCs), patient organizations and their youth groups to help improve treatment and care for people living with an inherited bleeding disorder around the world….

Today at the WFH 2022 World Congress – May 10

Welcome to day 3 of the WFH 2022 World Congress. Here are a few “must see” sessions we have curated for you today. To read full program, please click here….

Health issues in women and girls affected by hemophilia

The session, “Health issues in women and girls affected by hemophilia with a focus on nomenclature, heavy menstrual bleeding, and musculoskeletal issues” was held today at the WFH 2022 World Congress in Montreal, Canada. Chaired by Roseline d’Oiron, Director at the Reference Centre for Haemophilia and Congenital Bleeding Disorders, University…

Changing treatment, changes diagnosis

Today, “Changing treatment, changes diagnosis” was held at the WFH 2022 World Congress in Montreal, Canada….

Susan Skinner Memorial Fund Scholarship empowers women—you’re invited!

Despite the uncertainties leading up to the WFH 2022 World Congress, the 2022 Susan Skinner Memorial Fund Scholarship (SSMF) recipients have still been able to connect in person….

Young Researchers free paper sessions – part 1

Today, “Young Researchers free paper sessions – Part 1” was held at the WFH 2022 World Congress in Montreal, Canada. The talk was chaired by Johnny Mahlangu, Professor at the University of the Witwatersrand and NHLS, Johannesburg, South Africa….

WFH President Cesar Garrido delivers plenary talk at Congress

Today at the WFH 2022 World Congress in Montreal, Canada, WFH President Cesar Garrido delivered his plenary to participants and the greater global bleeding disorders community….

Nurul Islam receives 2022 WFH President’s Award

Every two years, the World Federation of Hemophilia (WFH) recognizes the outstanding volunteers who generously share their time, expertise, and energy with the global bleeding disorders community. Their contributions drive our progress towards the WFH vision of Treatment for All….

Introducing the myWBDR mobile app: a new WBDR data collection tool

There’s a new data collection tool that people with hemophilia (PWH) can use with the WFH World Bleeding Disorders Registry (WBDR)!…

Today at the WFH 2022 World Congress – May 9

Welcome to day 2 of the WFH 2022 World Congress. Here are a few “must see” sessions we have curated for you today. To read full program, please click here….

Michael Soucie receives 2022 WFH International Lifetime Achievement Award

Every two years, the World Federation of Hemophilia (WFH) recognizes the outstanding volunteers who generously share their time, expertise, and energy with the global bleeding disorders community. Their contributions drive our progress towards the WFH vision of Treatment for All….

Bradley Rayner receives 2022 WFH International Frank Schnabel Volunteer Award

Every two years, the World Federation of Hemophilia (WFH) recognizes the outstanding volunteers who generously share their time, expertise, and energy with the global bleeding disorders community. Their contributions drive our progress towards the WFH vision of Treatment for All. …

PROGRAM CHANGES: WFH 2022 World Congress

Please note that there have been changes to the program for the WFH 2022 World Congress….

Live demonstrations of WFH resources in exhibition hall

Live demonstrations of WFH Data Collection platforms and our enhanced eLearning Platform are taking place at the WFH Resource Centre in the exhibition hall!…

Today at the WFH 2022 World Congress – May 8

Welcome to day 1 of the WFH 2022 World Congress. Here are a few “must see” sessions we have curated for you today. To read full program, please click here….

Elección de cargos durante la Asamblea General de la Reunión Anual 2022 de la FMH

La Asamblea general de la Reunión Anual 2022 de la Federación Mundial de Hemofilia (FMH) se realizó hoy en Montreal, Canadá. Varios cargos se reafirmaron con la reelección de sus titulares; se votaron nuevos miembros del consejo; y diversas organizaciones nacionales miembros (ONM) se unieron a la familia de la…

¡ÚLTIMA OPORTUNIDAD PARA INSCRIBIRSE COMO PARTICIPANTE VIRTUAL AL CONGRESO MUNDIAL 2022 DE LA FMH!

Todavía hay tiempo para inscribirse como participante virtual al Congreso Mundial 2022 de la FMH y disfrutar de sesiones y contenido selectos desde la comodidad de su hogar u oficina….

CONGRESO MUNDIAL 2022 DE LA FMH – ¡Se agota el tiempo!

Las inscripciones en línea para el componente en persona del Congreso Mundial 2022 de la FMH estarán abiertas hasta la media noche del domingo 1o de mayo, Horario del Este (EST)….

Congreso Mundial 2022 de la FMH – ¡Ya está disponible el programa final!

¡Ya está disponible el programa final del Congreso Mundial 2022 de la FMH! Conozca todas las sesiones que ofrecemos este año en nuestros Programa de un vistazo y Horario de un vistazo….

Congreso Mundial 2022 de la FMH: ¡No se pierda las sesiones!

¡Ya falta poco para el Congreso Mundial 2022 de la FMH! El mes próximo –del 8 al 11 de mayo de 2022– el formato híbrido del congreso le ofrecerá los avances médicos y multidisciplinarios más recientes en nuestro campo. Las siguientes son cinco sesiones que no deberá perderse en mayo…

Congreso Mundial 2022 de la FMH – ¡Actualizaciones más recientes!

¡Las restricciones impuestas debido a la pandemia de COVID-19 se están eliminando en todo Canadá! A partir de este momento, el pasaporte de vacunación ya no es necesario en Quebec. A partir del 1o de abril de 2022, ya no habrá requisitos de pruebas previas a su llegada para las…

Congreso Mundial 2022 de la FMH: ¡El formato híbrido cuenta con una opción para todos!

El Congreso Mundial 2022 de la FMH se llevará a cabo como evento híbrido, permitiendo a los delegados participar en persona, en el Centro de convenciones de Montreal, o en línea a través de la plataforma virtual. …

¡Aproveche la tarifa de inscripción temprana y ahorre hoy!

¡Inscríbase al Congreso Mundial 2022 de la FMH antes del 11 de marzo de 2022 y ahorre hasta un 20% en cuotas de inscripción!…

El Congreso Mundial 2022 de la FMH tendrá lugar en mayo de 2022, como estaba previsto

Alrededor del mundo, las restricciones por la pandemia de COVID-19 se están relajando, y Montreal no es la excepción. Salones de congresos, restaurantes y otros establecimientos reabren plenamente y los viajes se facilitarán a partir de marzo. En muchos países, el relajamiento de las restricciones continuará durante las próximas semanas….

Ya está abierta la convocatoria para enviar resúmenes sobre novedades muy recientes

¡El Congreso Mundial 2022 de la FMH –un importante evento para la comunidad internacional de trastornos de la coagulación este año– está a la vuelta de la esquina! La FMH tiene el gusto de anunciar que ya está abierta la convocatoria para enviar resúmenes sobre novedades muy recientes. …

Presente su arte conmemorativo durante el Congreso Mundial 2022 de la FMH

El arte conmemorativo –utilizado para honrar y recordar a personas fallecidas debido a una tragedia– se expresa de muchas maneras. Ejemplos conocidos son el Proyecto NOMBRES (NAMES Project), el cubrecama de retazos en recuerdo del sida (AIDS Memorial Quilt), y el monumento en honor a los veteranos de Vietnam….

El programa en una ojeada: Congreso Mundial 2022 de la FMH

Conforme se acerca el final del año 2021, la Federación Mundial de Hemofilia (FMH) y la Sociedad Canadiense de Hemofilia (CHS por su sigla en inglés) se preparan para llevar a usted el Congreso Mundial 2022 de la FMH, del 8 al 11 de mayo de 2022….

¡Ya está próxima la fecha límite para presentar resúmenes!

Todavía está a tiempo de presentar su resumen para el Congreso Mundial 2022 de la Federación Mundial de Hemofilia que tendrá lugar en Montreal, Canadá, el año próximo. La fecha para presentar resúmenes es el 22 de noviembre de 2021, a las 11:59 p. m. Horario del Este (ET). Las…

Montreal: Lista para auspiciar el Congreso Mundial 2022 de la FMH

El año entrante, la Federación Mundial de Hemofilia (FMH) y la Sociedad Canadiense de Hemofilia (CHS por su sigla en inglés) darán la bienvenida a la comunidad mundial de trastornos de la coagulación a Montreal, Canadá, con motivo del Congreso Mundial 2022 de la FMH, que tendrá lugar del 8…

¡Ya está abierta la inscripción al Congreso Mundial 2022 de la FMH y comienza la recepción de resúmenes!

La FMH y se complace en invitarlo formalmente al Congreso Mundial 2022 de la FMH, ¡el primer gran evento híbrido de la comunidad de trastornos de la coagulación! Ya está abierta la inscripción y también la convocatoria para presentar resúmenes….

Montreal dará la bienvenida al Congreso mundial 2022 de la FMH

La Federación Mundial de Hemofilia (FMH) y la Sociedad Canadiense de Hemofilia (CHS por su sigla en inglés) tienen el gusto de dar la bienvenida a la comunidad mundial de trastornos de la coagulación al Congreso mundial 2022 de la FMH, el cual se realizará de manera híbrida por primera…

Amanda Brito del Pino: Entrevista con una receptora de las becas del Fondo en memoria de Susan Skinner

Amanda Brito del Pino es una de las receptoras de la beca del FMSS en 2018. Le hicimos algunas preguntas sobre lo que para ella implica recibir una beca del FMSS….

Jeanne White-Ginder: mother of Ryan White

Hear the Ryan White Story as told by his mother, Jeanne White-Ginder. Ryan was a boy living with hemophilia and diagnosed with AIDS following a transfusion of tainted clotting factor in December 1984….

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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.

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 [email protected] or call +1 514-875-7944.

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Hemophilia Alliance

Recognizing that training women leaders ensures the diversity our community need to thrive; the Hemophilia Alliance has been a longtime supporter of the Susan Skinner Memorial Fund. They deepened their engagement with the global community through the establishment of the Travel Grant Program, which allows US-based multidisciplinary healthcare professionals the opportunity to attend WFH global training workshops. The wealth of experience and perspective attendees bring back home to their communities helps patients across the country. Their patience and support as we grappled with changing norms in these challenging times gave us the flexibility to meet our community’s needs with revamped programming.

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

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

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

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

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)

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

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

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

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.

WFH President's Award - Recipients

National Bleeding Disorders Foundation

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.

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 [email protected].

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 [email protected] 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 [email protected].

Accessibility

If you have suggestions on how to make the site more accessible, please contact us at [email protected].

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 [email protected].

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 [email protected] or call 1-877-417-7944.

Premio internacional de la FMH por servicios destacados - receptores

International Lifetime Achievement Award - Recipients

Previous years

2012Christine Lee
United Kingdom
2006Dr. Bruce Evatt
United States

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

AÑOS PASADOS

2012 Piet de Kleijn
Países Bajos
2010 Dr. Mammen Chandy
India
2008 Dr. Man-Chiu Poon
Canadá
2006 Dr. Norma de Bosch
Venezuela
2004 Dr. Parttraporn Insarangkura
Tailandia

Dr. Carol K. Kasper
Estados Unidos

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

Premios a los hermanamientos del año

2020 Aluva (India) – Newcastle (Reino Unido)
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)

Premio Pietrogrande

2021 Axel Seuser
Alemania
2019 Dr. Adolfo Llinás
Colombia
2017 Pamela Hilliard
Canadá
2015 Kathy Mulder
Canadá
2013 James Luck
Estados Unidos
2012 Piet de Kleijn
Países Bajos
2011 Dr. Lily Heijnen
Países Bajos
2010 Dr. Horacio Caviglia
Argentina
2009 Jerome D. Wiedel
Estados Unidos
2008 Dr. Federico Fernández-Palazzi
Venezuela
2007 Michael Heim
Israel
2006 Brenda Buzzard
Reino Unido
2005 Dr. Marvin Gilbert
Estados Unidos

Premio Henri Horoszowski

2021 Baolai Hua
Yangzhou College, Xuzhou Medical University
The effects of intra-articular injection of TNF-alpha Antagonists in treatment of haemophilic synovitis
2019 Maarten Eerdekens
Bélgica
Asociación entre la cinética multisegmento del pie y el daño articular inducido por la sangre en pacientes adultos con artropatía hemofílica del tobillo
2017 Fabio Souza
Brasil
Decrease in joint inflammation, swelling and pain after a swimming protocol in animal model of experimental-induced hemarthrosis
2015 SM Javd Mortazavi
Irán
Bilateral total knee arthroplasty in patients with hemophilia: A safe and cost-effective procedure
2013 Lize F.D. van Vulpen
Estados Unidos
Una proteína de fusión de IL4 e IL10 es igualmente eficaz para proteger el cartílago del daño inducido por la sangre en comparación con los componentes
2012 Horacio Caviglia
Argentina
Cirugía de pseudotumor en pacientes con hemofilia A: resultados comparativos entre pacientes inhibidores y no inhibidores
2011 Nick Goddard
Reino Unido y
Monique van Meegeren
Países Bajos
La administración temprana de IL-4 e IL-10 previene el daño del cartílago inducido por la sangre in vitro
2010 Lydia Abad-Franch
España
Influencia de un protocolo de entrenamiento acuático en la reducción del riesgo de morbilidad y mortalidad cardiovascular en un hemofílico
2009 Sebastien Lobet
Bélgica
Impacto de la artropatía del tobillo con hemofilia en la discapacidad de la marcha: análisis de variables energéticas y mecánicas
2008 Jose Alberto Tlacuilo-Parra
 México
Marcadores de rotación ósea y densidad mineral ósea en niños con hemofilia
2007 Natalie Jansen
Países Bajos
Capacidades protectoras de la interleucina-10 en el daño del cartílago inducido por la sangre
2006 Axel Seuser y E. Kusch
Alemania
Estudio multicéntrico del resultado ortopédico de las extremidades inferiores en 249 niños con hemofilia
2005 Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders
Países Bajos
Lista de actividades para la hemofilia: desarrollo final y validación de un cuestionario de autoevaluación específico para hemofilia sobre las capacidades funcionales
2004 Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber
Países Bajos
La radiosinoviortesis con YTTRIUM-90 da como resultado efectos directos adversos sobre el cartílago: un estudio in vitro en humanos
2003 Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman
Alemania
¿Cómo aconsejar a los jóvenes hemofílicos que encuentren el deporte adecuado? Un algoritmo nuevo y seguro
2002 James Luck, Jr. y Mauricio Silva
Estados Unidos
Revisión a largo plazo de la artroplastia total de rodilla
2001 Federico Fernández-Palazzi
Venezuela
Clorhidrato de oxitetraciclina: un nuevo material para las órtesis sinoviales químicas
2000 Horacio Caviglia
Argentina
Pseudotumores
1999 William J. Ribbans y J.L. Hicks
Reino Unido
Comunicación y cooperación para el nuevo milenio: el futuro del comité musculoesquelético en el siglo XXI
1998 Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero
Colombia
La sinoviortesis de fosfato crómico sin restricción de edad debería ser la primera opción de tratamiento para la sinovitis hemofílica activa crónica

Premio internacional Frank Schnabel de la FMH - receptores

AÑOS PASADOS

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

Escalas de calidad de vida

Los resultados de interés recolectados en el RMTC abarcan características demográficas, resultados médicos y relacionados con el tratamiento, resultados de la carga de la enfermedad, y calidad de vida. La escala de calidad de vida, EQ-5D-5L, forma parte del conjunto de datos ampliados del RMTC. Está disponible en más de 130 idiomas y en diferentes formatos de administración.

Si desea un idioma diferente envíe un mensaje de correo electrónico a [email protected].

Los siguientes son otros idiomas disponibles:

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

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

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

Escalas funcionales

Los resultados de interés recolectados en el RMTC abarcan características demográficas, resultados médicos y relacionados con el tratamiento, resultados de la carga de la enfermedad, y resultados reportados por los pacientes.

El RMTC incluye cinco escalas funcionales (en inglés) como parte de su conjunto de datos ampliados:

Conjuntos de datos de hemofilia del RMTC

Conjunto de datos mínimo del RMTC

El conjunto de datos mínimo (CDM) es un grupo de datos demográficos, sobre diagnóstico, síntomas y tratamiento que se recolecta de los pacientes que participan en el RMTC.

Conjunto de datos ampliado del RMTC

El conjunto de datos ampliado (CDA)es un grupo de datos más grande, con mayores detalles que el CDM, que abarca preguntas sobre datos demográficos, diagnóstico, síntomas, tratamiento y carga de la enfermedad de los pacientes. Los centros de tratamiento de hemofilia pueden utilizar el CDA para recolectar información de pacientes que participan en el RMTC. El conjunto de datos ampliado (CDA) del RMTC se agregó a la base de datos en marzo del 2019.

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

Nuestra historia

Frank Schnabel, un hombre de negocios canadiense con hemofilia A grave, fundó la FMH en 1963. Schnabel estaba convencido de que las organizaciones de pacientes podían ser mucho más eficaces, y hacer más para representar los intereses de las personas con trastornos de la coagulación, si trabajaban unidas. El primer Congreso de la FMH se realizó en Copenhague, Dinamarca, el 25 de junio de 1963, y en él participaron representantes de 12 países. Actualmente, la FMH y su red mundial de organizaciones nacionales miembros (ONM) representan los intereses de personas con hemofilia y otros trastornos de la coagulación hereditarios en 147 naciones.