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Global Policy and Access Summit

The second edition of the WFH Global Policy and Access Summit (GPAS) will take place on October 27 and 28, 2022. Join us and your colleagues to:

  1. Share strategies for sustaining and advancing bleeding disorders care in the fast-changing pandemic world.
  2. Promote dialogue and knowledge sharing between national member organizations (NMOs), healthcare providers, and national governments.

Presentations and discussions during the two-day virtual summit will centre around improving care and access to treatment. The conference will include speakers and participants from local and international partner organizations, national government representatives, healthcare professionals, WFH NMO leaders, and bleeding disorders advocates.

The WFH Global Policy and Access Summit (GPAS) is a unique opportunity to inform, discuss, and exchange knowledge on strategies to increase equitable access to care and treatment for the global bleeding disorders community. We look forward to connecting with you virtually this October!

Also available in: English Français Español

Join us online at #MSKCongress

Global Policy and Access Summit

[email protected]

Registration for the Global Policy and Access Summit is free

Access on‑demand now

AGENDA

This two-day virtual event will feature plenary and educational sessions, slam sessions with advocacy cases and key stakeholder discussions*—all focusing on topics related to advancing care and access to treatment around the globe.

All session times are listed in EDT.

*Key stakeholder discussions are by invitation only.

Calendar









8:30 – 9:00
Opening plenary

Chair | Alain Baumann, CEO, World Federation of Hemophilia

Opening and welcome remarks | Cesar Garrido, President, World Federation of Hemophilia

The need for wise investments in health| Lieven Annemans, Belgium, Senior Full Professor of Health Economics, ICHER, Ghent University

9:00 – 10:00
Decision making and influencing health policy

Chair | Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation

Healthcare models and decision making | Jamie O’Hara, Director Ejecutivo, HCD Economics, Daresbury, Reino Unido

Influencing healthcare budget for patient organizing | Bradley Rayner, Chairman, South African Haemophilia Foundation

NMO role in Promoting Shared Decision Making | Clive Smith, Chair of the Board, The Haemophilia Society

10:00 – 10:15
Break
10:15 – 11:15
Lightning Round Session

Around the World in 60 Minutes: What Has Worked Well in Advocacy Initiatives and what are the lessons learned

Chair | Juan Andrés Pereira de Souza, Professor, Asociación De Hemofilia Del Uruguay

State-Based Advocacy Coalitions | Bill Robbie, Director, State Government Relations, National Hemophilia Foundation, New York, United States

Extension of Hemophilia Care throughout the Country; Barishal Division Example | Parimal Chandra Debnath, Vice President & PWH, Hemophilia Society of Bangladesh, Dhaka, Bangladesh

Strategic plan: Introduction of new therapies for Haemophilia A | Isabel Sorondo, President, Asociacion de Hemofilia del Uruguay, Montevideo, Uruguay

Juan Andrés Pereira de Souza, Professor, Asociación De Hemofilia Del Uruguay, Montevideo, Uruguay

The ICSPP (International Coalition for Safe Plasma Proteins) – leveraging partnerships and alliances with international organizations to improve access to safe plasma proteins in low- and middle- income countries

Jean-Claude Faber, President, Luxembourg Hemophilia Association (ALH), Luxembourg

11:15 – 12:15
Improving access: Data analysis to inform policy decisions

Chair |Kate Khair, Director of Research, Haemnet, London, United Kingdom

Data analysis to inform policy decisions | Declan Noone, President, European Haemophilia Consortium, Brussels, Belgium

A government perspective: Quality data for effective decision making | Jan Blatny, Vice President, EAHAD

What data is needed to make informed decisions | Carisi Polansky, Head of Cardiology, Hospital Moinhos de Vento, Porto Alegre, Brazil

Developing bd program: Spain’s case study | Victor Jimenez, Head of Hematology Department, Hospital Universitario La Paz

12:15 – 12:30
Break
12:30 – 13:30
Stakeholder discussion (invitation only)

Improving access to bleeding disorders care

7:00 – 8:00
Stakeholder discussion (invitation only)

Improving access to bleeding disorders care

8:30 – 9:00
Improving standards of care

Chair | Salome Mekhuzla, Director – Global Development, World Federation of Hemophilia, Montreal, Canada

Demonstrating disparities in access to adequate care | Glenn Pierce, VP Medical, World Federation of Hemophilia

Key principles and recommendations on improving standards of care | Johnny Mahlangu, Professor, University of the Witwatersrand and NHLS

9:00 – 10:00
Tackling inequities in access – Towards affordable care and treatment

Chair | Donna Coffin, Director, Research & Education, World Federation of Hemophilia, Montreal, Canada

Revisiting procurement models: Adapting to evolution in treatment options | Brian O’Mahony, CEO, Irish Haemophilia Society

The WHO Model List of Essential Medicines: A tool to advise national procurement decisions | Bernadette Cappello, Technical Officer, Essential Medicines List Secretariat, World Health Organization

NMO participation in the national procurement process: Serbia’s Experience | Dejan Petrovic, President, Serbian Hemophilia Society

Inclusion of Hemophilia in Universal Healthcare coverage: Thailand’s experience | Ekawat Suwantaroj, Vice President, Thai Hemophilia Patient Club – National Hemophilia Foundation of Thailand, Bangkok, Thailand

10:00 – 10:15
Break
10:15 – 11:15
Lightning Round Session

Advocacy Initiatives from PACT Advocacy Academy

Moderator | Salome Mekhuzla, Director – Global Development, World Federation of Hemophilia, Montreal, Canada

Overview
Julia Chadwick, Education Materials Coordinator, World Federation of Hemophilia, Montreal, Canada

Special person card for hemophilia patients
Usama Azam, Executive Member, Hemophilia Foundation Pakistan, Lahore, Pakistan

One law for all
Juan Andrés Pereira de Souza, Professor, Asociación De Hemofilia Del Uruguay, Montevideo, Uruguay

Procurement of Treatment Products for Hemophilia
Megan Adediran, Executive Director/ President, Hemophilia Foundation of Nigeria, Kaduna, Nigeria

11:15 – 11:30
Break
11:30 – 12:30
Tackling Inequities in Access: Industry perspective (Panel)

Moderator 

Glenn Pierce, VP Medical, World Federation of Hemophilia, La Jolla, United States

Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation, Gibsonia, United States

Panelists

BioMarin

CSL Behring

Kedrion Biopharma

Roche

Sanofi 

12:30 – 13:00
Closing Plenary

Chair
Alain Baumann, CEO, World Federation of Hemophilia, Montreal, Canada

Day 1 Stakeholders’ Summary
Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation, Gibsonia, United States

Day 2 Stakeholders’ Summary
Salome Mekhuzla, Director – Global Development, World Federation of Hemophilia, Montreal, Canada

Closing Remarks
Alain Baumann, CEO, World Federation of Hemophilia, Montreal, Canada
Pre-registration required
Simultaneous interpretation available in Spanish, French, Russian & Arabic
Program is subject to change

SPONSORS

The second edition of the WFH Global Policy and Access Summit (GPAS) is supported by funding from the Hemophilia Alliance and its member hemophilia treatment centres (HTCs) across the US.

SILVER SPONSORS

COMMITTEE & SPEAKERS

Alain Baumann

Alain Baumann
CEO – Chief Executive Officer
Federación Mundial de Hemofilia,
Montreal, Canadá

View profile >
Bernadette Cappello

Bernadette Cappello
Technical Officer, Essential Medicines List Secretariat
World Health Organization,
Geneva, Switzerland

View profile >
Bradley Rayner

Bradley Rayner
Chairman
South African Haemophilia Foundation
Cape Town, South Africa

View profile >
Brian O’Mahony

Brian O’Mahony
CEO
Irish Haemophilia Society
Dublin, Ireland

View profile >
Carisi Polanczyk

Cardiologist, Professor of Medicine and Coordinator of the National Institute for Health Technology Assessment/CNPq

View profile >
Cesar Garrido – Chair

Cesar Garrido
President World Federation of Hemophilia
Caracas, Venezuela

View profile >
Cheikh T. NIANG

WFH Western Africa Regional Manager

View profile >
Clive Smith

Clive Smith
Chair of the Board
The Haemophilia Society
London, United Kingdom

View profile >
Dawn Rotellini

Dawn Rotellini
Chief Operating Officer
National Hemophilia Foundation
Gibsonia, United States

View profile >
Declan Noone

Declan Noone
President
European Haemophilia Consortium
Brussels, Belgium

View profile >
Dejan Petrovic

Dejan Petrovic,

President, Serbian Hemophilia Society

View profile >
Ekawat Suwantaroj

Ekawat Suwantaroj
Lay Member, Board of Directors
Wolrd Federation of Hemophilia
Bangkok, Thailand

View profile >
Faber Jean-Claude

Dr. Faber Jean-Claude,

President, Luxembourg Hemophilia Association (ALH),

Luxembourg

View profile >
Glenn Pierce

Glenn Pierce
Vice-President, Medical
World Federation of Hemophilia
La Jolla, United States

View profile >
Guadalupe Lagrada

Sector Head, Regional Development,

WFH Global Development Department.

View profile >
Jamie O’Hara

Jamie O’Hara
Chief executive officer (CEO)
HCD Economics,
Daresbury, United Kingdom

View profile >
Jan Blatny

Vice President, EAHAD, Brno, Czech Republic

View profile >
Johnny Mahlangu

Johnny Mahlangu
Professor,
University of the Witwatersrand and NHLS
Johannesburg, South Africa

View profile >
Juan Andrés Pereira de Souza

Juan Andrés Pereira de Souza
Professor
Asociación De Hemofilia Del Uruguay
Montevideo, Uruguay

View profile >
Julia Chadwick

Education Materials Coordinator, WFH

View profile >
Kate Khair

Kate Khair
Director of Research at Haemnet

View profile >
Lieven Annemans

Lieven Annemans

Senior Full Professor of Health Economics

ICHER, Ghent University, Ghent, Belgium

View profile >
Megan Adediran

Megan Adediran
Executive Director
Haemophilia Foundation of Nigeria
Kaduna, Nigeria

View profile >
Miguel Crato

Miguel Crato
SC-member EHC
European Haemophilia Consortium
Montijo, Portugal

View profile >
Parimal Debnath

Program Manager of WFH PACT Program, Bangladesh.

View profile >
Salome Mekhuzla

Salome Mekhuzla
Director Global Development
World Federation of Hemophilia

View profile >

REGISTRATION INFORMATION

Watch all the sessions for the Global Policy and Access Summit on-demand until December 31, 2022.

Access on-demand now

RELEVANT RESOURCES

Interested in catching up on discussions from GPAS 2021? View recordings of select sessions on the WFH eLearning platform.

View resources

TRAVEL

The second edition of the WFH Global Policy and Access Summit will take place virtually.

FAQ

Please contact [email protected] for more information or for support

Q

Who can attend the event?

A
  • WFH NMO leaders and advocates
  • Healthcare professionals
  • National governments
  • Other organizations representing the interests of people with bleeding disorders
  • Regional and global government agencies (such as the WHO, etc.) and partner organizations
  • Industry representatives
  • Researchers and any individuals with interest in the field of bleeding disorders

Q

Will recordings be made available afterward the event?

A

 All sessions will be made available on demand after the event.

Q

Will there be any interpretation?

A

 The event will feature live interpretation in Spanish, French, Arabic and Russian.

 

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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.

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Resources from the Global Policy and access summit 2021

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Design Files

Download the campaign materials design files here!

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

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)

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

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

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

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

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

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

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

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

Advocacy toolkit

International Lifetime Achievement Award - Recipients

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Previous years

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

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.

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.

National Hemophilia Foundation

The National Hemophilia Foundation helps advance our mission on several fronts. They inspire others to follow their lead as a founding champion of the NHF Chapter Challenge. Their commitment to equality of access is demonstrated in their support of the Cornerstone Initiative, which lays the foundation for care in the world's most underserved regions, as well as programs that aim to raise awareness and improve care of women with bleeding disorders and those with von Willebrand disease. We also benefit from their steadfast engagement with various programs including the WFH Twinning Program and their individual leaders’ contribution to our leadership and committees.

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.

International Award for Outstanding Service - Recipients

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WFH President's Award - Recipients

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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.

International Healthcare Volunteer Award - Recipients

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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

Twins of the Year Awards

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

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

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Previous years

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

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