Дома »

ЛЕЧЕНИЕ И МЕДИЦИНСКАЯ ПОМОЩЬ

Лечение и медицинская помощь

ВФГ способствует установлению общемировых стандартов лечения, проводя мониторинг и информируя о безопасности и поставках препаратов, организуя международные совещания с участием многих заинтересованных сторон по проблемам доступа к безопасной и эффективной терапии и предоставляя нашему сообществу актуализированную и точную информацию о лечении.

Безопасность лекарственных препаратов и их поставки являются главным приоритетом сообщества лиц с коагулопатиями. ВФГ внимательно следит за безопасностью, поставками и доступностью препаратов; выпускает уведомления о безопасности и поставках препаратов; отслеживает разработку новых и инновационных препаратов и их регуляторный статус.

WFH SHARED DECISION-MAKING TOOL FOR HEMOPHILIA TREATMENT

What is Shared Decision-Making?

Shared Decision-Making (SDM) is a process by which clinicians and patients work together to make treatment decisions based on clinical evidence that balances risks and expected outcomes with patient preferences and values. SDM helps patients feel prepared in the decision-making process.

The WFH Shared Decision-Making Tool

The WFH SDM Tool is an interactive decision-support system designed to facilitate discussions regarding treatment options between people with hemophilia (PWH) A or B and/or caregivers and their healthcare team, leading to informed decision-making.

The WFH SDM Tool provides a framework to guide PWH through the thought process regarding treatment goals and preferences, provides evidence-based and balanced education on expected outcomes by treatment class, and helps PWH navigate the complexities of the current treatment options.

FUTURE UPDATES

The WFH SDM Tool is now available for use in English, Spanish, French and Japanese —and even more languages as we move forward. The WFH SDM Tool is a living tool that will be updated with new evidence twice per calendar year. The cutoff dates are June 30 and December 31, with updates taking place in the following month(s). Any new evidence after these cutoffs will be included in the next update.

For more information on the WFH SDM Tool, contact us at [email protected].

WE WANT YOUR FEEDBACK

A three-month public stakeholder comment period will be open from August 1 to November 1, 2023. We encourage you to participate in this important process by completing a survey in the WFH SDM Tool. Take a few moments and let us know what you think!

WFH SDM Tool is supported by funding from:

ИНИЦИАТИВА: ЖЕНЩИНЫ И ДЕВОЧКИ С КОАГУЛОПАТИЯМИ (ЖДСК)

Women and Girls with Bleeding Disorders Initiative logo

Инициатива в отношении ЖДсК рассчитана на 5 лет и призвана улучшить диагностику и доступ к медицинской помощи для всех ЖДсК, а также повысить их представленность и заметность в более широком сообществе лиц с нарушениями свертываемости крови.

Достижение поставленных целей планируется путем наращивания потенциала и повышения информированности, а также через поддержку и обмены в формате «равный равному».

Имеющаяся потребность

В настоящее время среди лиц с диагнозом «гемофилия» женщины и девочки составляют лишь 4,5 % вместо ожидаемых 30 %, поскольку на одного мужчину с гемофилией приходится 1,6 соматической носительницы. Среди женщин, страдающих от тяжелых менструальных кровотечений, приблизительно у каждой пятой первопричиной является нарушение свертываемости крови.

Несмотря на это, недостаточное диагностирование коагулопатий остается очень частым явлением: медианная задержка в постановке диагноза составляет 10 лет для женщин и 4 года для девочек.

И это вызывает озабоченность, поскольку ЖДсК имеют повышенный риск развития целого ряда нарушений, включая анемию, кровотечения во время беременности и другие коагулопатические проблемы. Кроме того, у женщин и девочек вообще больше препятствий на пути доступа к медицинской помощи. Это связано со стигматизацией менструаций, предвзятостью по половому признаку и наличием сексизма. Все перечисленные выше факторы приводят к тому, что часто ЖДсК не получают необходимого диагноза и медицинского обслуживания, а также недостаточно представленны в базах данных по эпиднадзору и медицинской помощи.

Learn more about women and girls with hemophilia

ЦЕЛИ ИНИЦИАТИВЫ В ОТНОШЕНИИ ЖДСК

Инициатива в отношении ЖДсК направлена на:

  1. Расширение доступа ЖДсК к диагностированию и медицинскому обслуживанию на принципах равноправия.
  2. Масштабное повышение информированности и выстраивание сотрудничества по вопросам ЖДсК.
  3. Укрепление партнерств между медицинскими работниками (МР) и национальными членскими организациями (НЧО) через поддержку и обмен в формате «равный равному».

КОМПОНЕНТЫ ПРОГРАММЫ

Программа строится на трех основных компонентах, указанных ниже.

Цель наращивания потенциала состоит в том, чтобы усилить равноправный доступ к диагностике и медицинской помощи для ЖДсК путем:

  • повышения уровня знаний МР о комплексном клиническом ведении ЖДсК;
  • укрепления способности НЧО отстаивать право ЖДсК на равноправный доступ к медицинской помощи.

Для достижения поставленных целей будут организованы образовательные конференции, включая проводимый раз в два года «Глобальный саммит ВФГ по ЖДсК» и целевые обучающие семинары. Также будут разрабатываться и распространяться образовательные материалы. В рамках Программы стипендий Мемориального фонда Сьюзен Скиннер (МФСС) раз в два года ЖДсК будут получать целевые возможности продолжить расширение своего потенциала.

В 2020 и 2021 гг. ВФГ провела «Глобальный саммит по ЖДсК», что дало возможность сообществу лиц с коагулопатиями обменяться опытом по комплексному лечению ЖДсК.

The awareness raising component aims to increase global awareness and foster collaboration on WGBD issues by:

  • Enhancing WFH global action to raise awareness about the reality of WGBD worldwide
  • Strengthening collaboration between the WFH and civil society supporting WGBD
  • Increasing the presence of WGBD across WFH programs

This will be achieved through the endorsement of a better nomenclature to refer to WGBD, a social media campaign to address facts regarding the realities faced by WGBD, a collaboration with other associations, and the incorporation of a WGBD perspective into WFH programs and tools.

The Data collection component aims to increase access to data on WGBD by:

Enhancing capacity on collection and reporting data on WGBD among NMOs and HTCs and increasing the WFH’s data collection efforts on WGBD.

This will be achieved through the inclusion of additional questions regarding WGBD into the WFH Annual global survey, the promotion of the inclusion of more women and girls into the WBDR and the support of research and publications on WGBD.

To access more content about WGBD, please click here. For more information, contact the WFH at [email protected].

ИНИЦИАТИВУ ПО ЖДСК ФИНАНСОВО ПОДДЕРЖИВАЮТ:

Hemophilia of Georgia logo
LFB logo
National Bleeding Disorders Foundation logo

ОНЛАЙН РЕГИСТР КФС

Регистр КФС помогает медицинским работникам идентифицировать имеющиеся в наличии концентраты факторов свертывания (КФС) и быть в курсе изменений, внесенных фармацевтическими компаниями. На платформе размещено большое количество легкодоступных и активно обновляемых данных, которые могут использовать медицинские работники и должностные лица, фармацевты и люди с коагулопатиями для информированного принятия решений.

Платформа электронного обучения ВФГ eLearning

ПУБЛИЧНЫЕ ЗАЯВЛЕНИЯ И УВЕДОМЛЕНИЯ

Заявления и уведомления ВФГ – это официальные сообщения от ВФГ, касающиеся вопросов безопасности, поставок и доступа к лечению.

ОТКАЗ ОТ ОТВЕТСТВЕННОСТИ

Заявления и уведомления публикуются исключительно в целях общего информирования. ВФГ не занимается медицинской практикой и не предоставляет медицинских консультаций. ВФГ никоим образом не рекомендует конкретное лечение тем или иным лицам. Для постановки медицинского диагноза или получения лечения ВФГ рекомендует обращаться к своему врачу или в местный центр лечения гемофилии (ЦЛГ).

ПОСЛЕДНИЕ ОПУБЛИКОВАННЫЕ ЗАЯВЛЕНИЯ И УВЕДОМЛЕНИЯ

РАНЕЕ ОПУБЛИКОВАННЫЕ ЗАЯВЛЕНИЯ И УВЕДОМЛЕНИЯ

РУКОВОДСТВО ПО ЛЕЧЕНИЮ

Работая на благо мирового сообщества людей с коагулопатиями, ВФГ создает самые современные стандарты оказания медицинской помощи, основанные на научных данных.

Руководство ВФГ по лечению гемофилии

В августе 2020 г. было опубликовано 3-е издание «Руководства ВФГ по лечению гемофилии», над которым работала международная группа экспертов из числа медицинских работников (МР) и лиц с гемофилией (ЛсГ). Публикация преследует цель установить общемировой стандарт медицинской помощи и дать доступ всем МР и ЛсГ к самым современным лечебным рекомендациям, чтобы в итоге обеспечить наилучшие результаты для здоровья ЛсГ, минимизировать вред и снизить вариативность мировой клинической практики.

С опубликованным «Руководством» и сопутствующими материалами можно ознакомиться на ресурсном портале «Руководства по лечению».

РУКОВОДСТВО ПО ДИАГНОСТИКЕ И ЛЕЧЕНИЮ БОЛЕЗНИ ВИЛЛЕБРАНДА

Предлагаемые клинические рекомендации по диагностике и лечению болезни Виллебранда (БВ) разработаны в партнерстве с Американским обществом гематологов (ASH), Международным обществом по тромбозам и гемостазу (ISTH) и Национальным фондом гемофилии (NHF) и опубликованы в 2021 г. В рекомендациях содержатся важные указания относительно профилактики, небольших и крупных хирургических вмешательств, тяжелых менструальных и послеродовых кровотечений, диагностических пороговых уровней, генетического тестирования и многое другое. Документ является ценным ресурсом для клиницистов и лиц с БВ при совместном принятии решений о тактике индивидуального лечения. Рекомендации также являются прочным основанием для важной работы по адвокации за расширение доступа к рекомендованным методам диагностики и вариантам лечения во всех странах.

С опубликованным «Руководством» и сопутствующими материалами можно познакомиться в онлайне.

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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.

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.

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
  • Nursing
  • 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

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
  • Psychology and social services

Japan - Nara

Year of IHTC designation: 1998

Nara Hemophilia Centre
Nara Medical University

Areas of Specialty

  • Adult and pediatric hematology
  • Dental care
  • Laboratory diagnosis and Molecular genetics
  • Nursing
  • Orthopedic care and surgery
  • 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
  • Blood banking
  • Dental care
  • Diagnostic assessment of platelet functional defects
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • Psychology and social services

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

France - Paris

Year of IHTC designation: 1972

Paris Haemophilia Centre (Necker (N) and Kremlin Bicêtre (KB) Hospitals)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Dental care
  • Orthopedic care and surgery
  • Physiotherapy
  • Psychology and 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

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
  • Orthopedic care and surgery
  • 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
  • Physiotherapy

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 and pediatric hematology

Australia - Melbourne

Year of IHTC designation: 2005

Ronald Sawers Haemophilia Treatment 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

South Africa - Johannesburg

Year of IHTC designation: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Dental care
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic surgery
  • Physiotherapy

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
  • Blood banking (on request)
  • Dental care and surgery
  • Laboratory diagnosis and genetics
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy

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

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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].

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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.

International Award for Outstanding Service - Recipients

International Lifetime Achievement Award - Recipients

Previous years

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

International Healthcare Volunteer Award - Recipients

Previous years

2012 Piet de Kleijn
The Netherlands
2010 Dr. Mammen Chandy
India
2008 Dr. Man-Chiu Poon
Canada
2006 Dr. Norma de Bosch
Venezuela
2004 Dr. Parttraporn Insarangkura
Thailand

Dr. Carol K. Kasper
United States

Thailand - Bangkok

Year of IHTC designation: 1984

International Hemophilia Training Center – Bangkok
Ramathibodi Hospital
Mahidol University

Areas of Specialty

  • Adult and pediatric hematology
  • Blood banking
  • Dental care and surgery
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • Psychology and social services

Twins of the Year Awards

2022 Amman (Jordan) – Dublin (Ireland)
2021 Addis Ababa (Ethiopia) – Minneapolis (U.S.A) and
Tehran (Iran) – Milan (Italy)
2020 Aluva (India) – Newcastle (UK)
2019 Yogyakarta / Solo (Indonesia) – Utrecht (Netherlands)
2018 Abidjan (Ivory Coast) – Brussels (Belgium)
2017 Santa Cruz de la Sierra (Bolivia) – Buenos Aires (Argentina)
2016 Kampala (Uganda) – London (UK)
2015 Varna (Bulgaria) – Bonn (Germany)
2014 Arequipa (Peru) – Los Angeles (USA)
2013 Davangere (India) – Liverpool (UK)
Ludhiana (India) – Detroit (USA)
2012 Hanoi (Vietnam) – Melbourne (Australia)
2011 Manado (Indonesia) – Utrecht (Netherlands)
2010 Delhi (India) – Winnipeg (Canada)
Yaoundé (Cameroon) – Geneva (Switzerland)
2009 Chisinau (Moldova) – Warsaw (Poland)
Colombo (Sri Lanka) – Vellore (India)
2008 Gaborone (Botswana) – Philadelphia (USA)
2007 Vientiane (Laos) – Brest (France)
Damascus (Syria) – Montpellier (France)
2006 Lima (Peru) – Fort Worth (USA)
2005 Yerevan (Armenia) – Minneapolis (USA)
Casablanca (Morocco) – Caen (France)
2004 Beirut (Lebanon) – Geneva (Switzerland)
Santo Domingo (Dominican Republic) – Caracas (Venezuela)
2003 Cairo (Egypt) – Knoxville (USA)
2002 Moscow (Russia) – Liverpool (UK)
Panama – Valencia (Spain)
2001 Bangalore (India) – St. Louis (USA)
2000 Pune (India) – Bradford (UK)
1999 Montevideo (Uruguay) – Buenos Aires (Argentina)
Tianjin (China) – Calgary (Canada)
1998 Plovdiv (Bulgaria) – Bonn (Germany)
1997 Bogota (Colombia) – Los Angeles (USA)
Tartu (Estonia) – Stockholm (Sweden)
1996 Timisoara (Romania) – Munich (Germany)
Riga (Latvia) – Munster (Germany)
1995 Klaipeda (Lithuania) – Malmo (Sweden)
1994 Bratislava (Slovakia) – Tel Hashomer (Israel)

Pietrogrande Prize

2023 Nicholas Goddard
United Kingdom
2021 Axel Seuser
Germany
2019 Dr. Adolfo Llinás
Colombia
2017 Pamela Hilliard
Canada
2015 Kathy Mulder
Canada
2013 James Luck
United States
2012 Piet de Kleijn
The Netherlands
2011 Dr. Lily Heijnen
The Netherlands
2010 Dr. Horacio Caviglia
Argentina
2009 Jerome D. Wiedel
United States
2008 Dr. Federico Fernández-Palazzi
Venezuela
2007 Michael Heim
Israel
2006 Brenda Buzzard
United Kingdom
2005 Dr. Marvin Gilbert
United States

Henri Horoszowski Award

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
Belgium
Association between multi-segment foot kinetics and blood induced joint damage in adult patients with hemophilic ankle arthropathy
2017 Fabio Souza
Brazil
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
United States
A fusion protein of IL4 and IL10, is equally effective in protecting cartilage from blood-induced damage compared to the individual components
2012 Horacio Caviglia
Argentina
Pseudotumor Surgery in Haemophilia A patients: Comparitive results between inhibitor and non-inhibitor patients
2011 Nick Goddard
United Kingdom and
Monique van Meegeren
The Netherlands
Early onset administration of IL-4 and IL-10 prevents blood-induced cartilage damage in vitro
2010 Lydia Abad-Franch
Spain
Influence of an Aquatic Training Protocol on the Reduced Risk of Cardiovascular Morbidity and Mortality in a Hemophiliac
2009 Sebastien Lobet
Belgium
Impact of Hemophilia Ankle Arthropathy on Gait Disability: Analysis of Energetic and Mechanical Variables
2008 Jose Alberto Tlacuilo-Parra
Mexico
Bone Turnover Markers and Bone Mineral Density in Children with Hemophilia
2007 Natalie Jansen
The Netherlands
Protective Abilities of Interleukin-10 in Blood-induced Cartilage Damage
2006 Axel Seuser and E. Kusch
Germany
Multi-Center Study of Orthopedic Outcome of the Lower Extremities in 249 Children with Hemophilia
2005 Frank van Genderen, Nico van Meeteren, Lily Heijnen, Piet de Kleijn, Marijke van den Berg, Paul Helders
The Netherlands
The Hemophilia Activities List: Final development and validation of a hemophilic-specific self-assessment questionnaire on functional abilities
2004 Goris Roosendaal, Zalima N Jahangier, Kim MG Jacobs, Johannes WJ Bijlsma, Floris PJG Lafeber
The Netherlands
Radiosynoviorthesis using YTTRIUM-90 results in adverse direct effects on cartilage: a human in vitro study
2003 Axel Seuser, Thomas Wallny, Günter Schumpe, Elmar Trunz, Hans-Hermann Brackman
Germany
How to advise young haemophiliacs to find the right sport? A new and safe algorithm
2002 James Luck, Jr. and Mauricio Silva
United States
Long-Term Review of Total Knee Arthroplasty
2001 Federico Fernández-Palazzi
Venezuela
Oxytetracycline Chlorohydrate: A new material for chemical synovial orthoses
2000 Horacio Caviglia
Argentina
Pseudotumours
1999 William J. Ribbans and J.L. Hicks
United Kingdom
Communication and Co-operation for the New Millennium – The Future of the Musculoskeletal Committee in the 21st Century
1998 Adolfo Llinas, Mauricio Silva, Monica Duarte, Gonzalo Ucros, Graciela Perini, Angela Maria Cerquera, Andres Forero
Colombia
Chromic phosphate synoviorthesis without age restriction should be the first treatment option for chronic active hemophilic synovitis

International Frank Schnabel Volunteer Award - Recipients

Previous years

2012Martha Patricia Monteros Rincon
Mexico
2010Antonia Luque de Garrido
Venezuela
2008Jean Michel Bouchez
France
2006Yuri Zhulyov
Russia
2004Ashok Verma
India

Functional Scales

The outcomes of interest collected by the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and patient-reported outcomes.

The WBDR includes five functional scales as part of its extended data set:

WBDR hemophilia data sets

WBDR Minimal Data Set

The WBDR Minimal Data Set (MDS) is a set of data on demographics, diagnosis, symptoms and treatment which are collected on patients participating in the WBDR.

WBDR Extended Data Set

The WBDR Extended Data Set (EDS) is a larger set of data, with more details than the MDS, which includes questions on patient demographics, diagnosis, symptoms, treatment and burden of disease. The EDS can be used by hemophilia treatment centers to collect data on patients participating in the WBDR. The WBDR Extended Data Set (EDS), was added to the database in March 2019.

United States - Columbus, Ohio

Year of IHTC designation: 2018

Nationwide Children’s Hospital

Areas of Specialty

  • Dental care
  • Laboratory diagnosis
  • Nursing
  • Orthopedic care and surgery
  • Pediatric hematology services
  • Physiotherapy/occupational therapy
  • 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

Lifespan Orthopaedic Hemophilia Treatment Center at Luskin Orthopedic Institute for Children

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • 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
  • Blood banking
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy
  • 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

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 - Oxford

Year of IHTC designation: 1972

Oxford Haemophilia 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
  • Psychology and social services

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

Наша история

Всемирная федерация гемофилии основана в 1963 г. канадским бизнесменом Франком Шнабелем, у которого была врожденная тяжелая гемофилия А. Он верил в то, что сообща пациентские организации способны значительно повысить свою эффективность и достигнуть большего в интересах людей с коагулопатиями. На первом конгрессе ВФГ в Копенгагене (Дания), прошедшем 25 июня 1963 г., присутствовали представители 12 стран. Сегодня в глобальную сеть ВФГ входят национальные членские организации (НЧО), которые представляют интересы лиц с гемофилией и другими наследственными коагулопатиями из 152 стран.