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Global Forum

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Global Forum
[email protected]

Mark your calendars! The 13th World Federation of Hemophilia (WFH) Global Forum will take place in-person from November 17 to 18, 2023, at the Fairmont Queen Elizabeth hotel in beautiful Montreal, Canada. This year’s forum will focus on the latest advances in treatments and technologies for bleeding disorders.

The WFH Global Forum is an essential event for anyone with an interest in the developments that are shaping the global bleeding disorders community today. With several new therapeutic options in the pipeline, it’s time to collectively assess these advances, identify their strengths and limitations, determine what will facilitate or hinder their adoption, and evaluate their impact on patients. The forum will cover many of these topics and more, including the following:

  • Confronting limitations of therapies, from plasma to gene therapy
  • Therapeutic options for people with moderate/mild hemophilia patients, women and girls with bleeding disorders, and rare bleeding disorders
  • Inequities in healthcare delivery
  • Innovative access programs
  • Hot topics

This year’s event features an updated format that will feature a discussion specific to gene therapy. By integrating gene therapy into the WFH Global Forum, attendees will have the chance to hear from the leading experts in the field and participate in the ongoing discussions of what is impacting care in our field today.

The Global Forum will be co-chaired by Glenn Pierce, MD, PhD, WFH Vice President Medical, and Mike Makris, MD.

We look forward to welcoming you in Montreal this November!

GOVERNMENTAL WELCOME

The Right Honourable Justin Trudeau, Prime Minister of Canada and François Legault, the Premier of Quebec both extend a warm welcome to all attending the 13th WFH Global Forum in Montreal this year.

Read the letter from Justin Trudeau, Prime Minister of Canada.

Read the letter from François Legault, Premier of Quebec.

Read the letter from Justin Trudeau, Prime Minister of Canada.

 

Read the letter from François Legault, Premier of Quebec.

 

AGENDA

Note: the 13th WFH Global Forum is only offered in English.

Calendar

8:15-8:30

OPENING: Welcome

 
 

Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States
Mike Makris, Professor, University of Sheffield, Sheffield, United Kingdom


8:30-10:35

SESSION 1: Confronting limitations of therapies

 
 

The first 2 sessions of the 13th WFH Global Forum will focus on confronting limitations of therapies for all people with bleeding disorders. Speakers in this session will discuss issues related to plasma, orphan inherited bleeding disorders, treatment of moderate & mild patients, women & girls with bleeding disorders, as well as platelet disorders. The second session will focus on the treatment of hemophilia A and B.

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

Welcome and introductions
Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States

Classification of severity of hemophilia: Do we need a change?
Mike Makris, Professor, University of Sheffield, Sheffield, United Kingdom
Johnny Mahlangu, Professor, University of the Witwatersrand and NHLS, Johannesburg, South Africa

Plasma supply & demand
Brian O’Mahony, CEO, Irish Haemophilia Society, Dublin, Ireland

Orphan inherited bleeding disorders
Magdalena Lewandowska, Adult Hematologist-Oncologist, Indiana Hemophilia and Thrombosis Center (IHTC), Indianapolis, United States

Treatment of moderate and mild patients
Samantha Gouw, Pediatric Hematologist, Amsterdam UMC, Amsterdam, Netherlands

Optimal therapies for women & girls with bleeding disorders
Dawn Rotellini, Chief Operating Officer, National Bleeding Disorders Foundation, Gibsonia, United States

Platelet transfusions & substitutes
Catherine Hayward, Professor, Pathology & Molecular Medicine, McMaster University, Hamilton, Canada


10:35-11:00

BREAK


11:00-12:25

SESSION 2: Confronting limitations of therapies

 
 

The first 2 sessions of the 13th WFH Global Forum will focus on confronting limitations of therapies for all people with bleeding disorders. Speakers in this session will focus on the treatment of hemophilia, discussing CFCs, factor VIII mimetics, rebalancing agents, and gene therapy. Issues specific to gene therapy will also be addressed. This will build upon the previous session which will focus on plasma, other bleeding disorders, moderate & gild patients, and women and girls with bleeding disorders.

Chair
Mike Makris, Professor, University of Sheffield, Sheffield, United Kingdom

Welcome and Introductions
Mike Makris, Professor, University of Sheffield, Sheffield, United Kingdom

Limitations of therapies: Hemophilia A (CFCs, GT, factor VIII mimetics)
Margareth Ozelo, Professor, Hemocentro Unicamp, Sao Paulo, Brazil

Limitations of therapies: Hemophilia B (CFCs, GT)
Steven Pipe, Professor of Pediatrics and Pathology, University of Michigan, Ann Arbor, United States

Limitations of therapies: Hemophilia A & B (rebalancing agents)
Pratima Chowdary, Consultant Haematologist, Royal Free Hospital, London, United Kingdom

Real world implications of antibodies & assay issues in gene therapy
Radoslaw Kaczmarek, Assistant Research Professor of Pediatrics, Indiana University School of Medicine, Indiana, United States


12:25-13:25

LUNCH


13:25-14:50

SESSION 3: Inequities in health care delivery

The afternoon of day 1 will focus on inequities in health care delivery and innovative access programs. Following a presentation on the affordability of global bleeding disorders treatment, new therapeutic approaches to optimize treatment in countries with limited resources will be presented. The following session will address issues related to the establishment of gene therapy programs in lower income countries as well as corporate partner innovative access programs.

Chair
David Lillicrap, Professor, Queen’s University, Kingston, Canada

Welcome and introductions
David Lillicrap, Professor, Queen’s University, Kingston, Canada

Affordability of global bleeding disorders treatment
Brian O’Mahony, CEO, Irish Haemophilia Society, Dublin, Ireland

Emicizumab: Low dose or non-standard interval doses
Alfonso Iorio, Professor, Mcmaster University, Hamilton, Canada

Use of bispecific antibodies in low-income countries: Lessons from the humanitarian aid program
Cedric Hermans, Hematologist, Cliniques universitaires Saint-Luc, Brussels, Belgium

Using BT200 (rondaptivon pegol) in countries with limited access to CFCs
James Gilbert, Lexington, United States
Andrea Edginton, Professor and Hallman Director, School of Pharmacy, University of Waterloo, Waterloo, Canada


14:50-15:20

BREAK


15:20-17:05

SESSION 4: Inequities in health care delivery / Innovative access programs

The afternoon of day 1 will focus on inequities in health care delivery and innovative access programs. Speakers in this session will present achievements and challenges of establishing gene therapy trials in different lower income country settings, as well as different corporate partner innovative access programs. This will build upon the previous session which will address affordability and new therapeutic approaches to optimize treatment in countries with limited resources.

Chair
Cedric Hermans, Hematologist, Cliniques universitaires Saint-Luc, Brussels, Belgium

Welcome and introductions
Cedric Hermans, Hematologist, Cliniques universitaires Saint-Luc, Brussels, Belgium

St. Judes – Achievements and challenges in establishing a gene therapy trial in low-income countries
Ulrike Reiss, Associate Member, St. Jude Children’s Research Hospital, Memphis, United States

Achievements and challenges in establishing a gene therapy trial in low-income countries
Alok Srivastava, Professor, Christian Medical College, Vellore, Indiaf

Sanofi – Global Health Access programs
Cecile Le Camus, Global Head of Medical Affairs Rare Diseases, Sanofi Genzyme

Pfizer – ACCORD program
Lisa Wilcox, Global Medical Lead – Hemophilia, Pfizer, Ajax, Canada

Roche – Innovative access strategies for emicizumab
Martynas Aizenas, Global Access Strategy Leader, Roche, Basel, Switzerland


19:00-21:00

RECEPTION

8:15-8:50

SESSION 5: Keynote

Chair
Thomas Sannié Honorary, President Association Française des Hémophiles Paris, France

Welcome and introductions
Thomas Sannié Honorary, President Association Française des Hémophiles Paris, France

Learning from the past, and preparing for the future
André Picard, Health columnist, The Globe and Mail, Vancouver, Canada


8:50-9:55

SESSION 6: WFH Programs

This session will focus on different WFH initiatives and how they address the needs of the global bleeding disorders community, improving and sustaining care for all people with inherited bleeding disorders.

Chair
Miguel Escobar, Professor – Hematology, University of Texas Texas, United States

Welcome and introductions
Miguel Escobar, Professor – Hematology, University of Texas Texas, United States

Humanitarian aid program
Assad Haffar Director – Humanitarian Aid World Federation of Hemophilia Montreal, Canada

WFH registries
Mayss Naccache, Gene Therapy Program Manager, World Federation of Hemophilia, Montreal, Canada

WFH Shared Decision-Making Tool
Donna Coffin, Director – Research & Education, World Federation of Hemophilia, Montreal, Canada

WFH Advocacy: Essential medicine list
Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States


9:55-10:25

BREAK


10:25-11:55

SESSION 7: Gene therapy market access & economics

This session will focus on the market access and economics of gene therapy for hemophilia, in high income countries as well as lower- and middle-income countries. Access pathways in Germany, China, and South Africa will be presented prior to a panel discussion.

Chair
Mark Skinner, President and CEO, Institute for Policy Advancement Ltd, Washington, United States

Welcome and introductions
Mark Skinner, President and CEO, Institute for Policy Advancement Ltd, Washington, United States

Insights from the 1st Health Technology Assessments for hemophilia A & B gene therapy
David Rind, Chief Medical Officer, ICER, Boston, United States

Promoting global access to medical innovation: The challenge for gene therapy in hemophilia
Louis Garrison, Professor, University of Washington, Washington, United States

Access pathway – Germany
Johannes Oldenburg, Director, Institute for Experimental Haematology and Transfusion Medicine, Bonn, Germany

Access pathway – China
Renchi Yang, Head of Thrombosis and Hemostasis Centre, Institute of Hematology and Blood Diseases Hospital, Tianjin, China

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


11:55-12:40

LUNCH


12:40-15:00

SESSION 8: Hot topics

The hot topics session will provide the community with an opportunity to learn about the latest advances in treatments and technologies for bleeding disorders.

Chair
Flora Peyvandi, President, ISTH, Milan, Italy
Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States

Welcome and introductions
Flora Peyvandi, President, ISTH, Milan, Italy
Glenn Pierce, Vice-President – Medical, World Federation of Hemophilia, La Jolla, United States

DDAVP
Nathan Connell, Assistant Professor of Medicine, Brigham and Women’s Hospital – Harvard Medical School Boston, United States

Pipeline for new VWD therapies
Sophie Susen, Professor, MD, CRC-MHC, Lille University Hospital, Lille, France

nxt007
Keiji Nogami, Professor, MD, Department of Pediatrics – Nara Medical University, Kashihara, Japan

mim8
Steve Lentz, Henry Hamilton Chair in Hematology, The University of Iowa Carver College of Medicine, Iowa City, United States

14:00 – 14:10

Pause

Marstacimab
Davide Matino, Assistant Professor, Thrombosis and Atherosclerosis Research Institute (TaARI) – McMaster University, Hamilton, Canada

Concizumab
Pratima Chowdary, Consultant Haematologist, Royal Free Hospital, London, United Kingdom

Fitusiran
Alok Srivastava, Professor, Christian Medical College, Vellore, India

Gene editing
Meagan O’Brien, Clinical Medical Director Program Lead, Regeneron Pharmaceuticals, Inc., United States

Be Biopharma
Krishnan Viswanadhan, President & Chief Operating Officer, Be Biopharma, Cambridge, United States


15:00-15:10

CLOSING REMARKS

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

Mike Makris, Professor, University of Sheffield, Sheffield, United Kingdom

All times are listed in eastern time (ET)

Program is subject to change









By invitation only
Simultaneous interpretation available in Spanish, French, Russian & Arabic
Program is subject to change

COMMITTEE & SPEAKERS

Show all

Committee

Speakers

Alfonso Iorio

Professor, McMaster University
Hamilton, Canada

Alok Srivastava

Professor, Christian Medical College
India

André Picard

Health columnist, The Globe and Mail
Vancouver, Canada

Andrea Edginton

Professor and Hallman Director, University of Waterloo
Waterloo, Canada

Assad Haffar

Medical & Humanitarian Aid Director, WFH
Montreal, Canada

Brian O'Mahony

CEO, Irish Haemophilia Society
Dublin, Ireland

Catherine Hayward

Professor, Pathology & Molecular Medicine, McMaster University
Hamilton, Canada

Cecile Le Camus

Global Head of Hemophilia with Medical Affairs Rare Blood Disorders, Sanofi
Cambridge, United States

Cedric Hermans

Head, Hemophilia Center Cliniques Universitaires Saint-Luc
Brussels, Belgium

David Lillicrap

Professor, Queen's University
Kingston, Canada

David Rind

Chief Medical Officer, ICER
Boston, United States

Davide Matino

Assistant Professor
Thrombosis and Atherosclerosis Research Institute (TaARI) - McMaster University
Hamilton, Canada

Dawn Rotellini

Chief Operating Officer, National Bleeding Disorders Foundation
Gibsonia, United States

Donna Coffin

Director, Research & Education, WFH
Montreal, Canada

Flora Peyvandi

President, ISTH
Milan, Italy

Glenn Pierce

Vice-President, Medical, WFH
United States

James Gilbert

Lexington, United States

Johannes Oldenburg

Director, Institute for Experimental Haematology and Transfusion Medicine
Bonn, Germany

Johnny Mahlangu

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

Keiji Nogami

Professor, MD, Department of Pediatrics - Nara Medical University
Kashihara, Japan

Krishnan Viswanadhan

President & Chief Operating Officer, Be Biopharma
Cambridge, United States

Lindsey George

Assistant Professor, Perelman School of Medicine, University of Pennsylvania and Director of Clinical In Vivo Gene Therapy, Children’s Hospital
Philadelphia, United States

Lisa Wilcox

Global Medical Lead - Hemophilia, Pfizer
Greater Toronto Area, Canada

Louis Garrison

Professor, University of Washington
Washington, United States

Magdalena Lewandowska

Adult Hematologist-Oncologist, Indiana Hemophilia and Thrombosis Center (IHTC)
Indianapolis, United States

Margareth C. Ozelo

Professor, Hemocentro Unicamp
Sao Paulo, Brazil

Mark Skinner

President and CEO, Institute for Policy Advancement Ltd

Martynas Aizenas

Global Access Strategy Leader, Roche
Basel, Switzerland

Mayss Naccache

Head - Gene Therapy Program, WFH
Montreal, Canada

Meagan O'Brien

Clinical Medical Director Program Lead, Regeneron Pharmaceuticals, Inc.
United States

Miguel Escobar

Professor, University of Texas
Austin, United States

Mike Makris

Professor, University of Sheffield
United Kingdom

Nathan Connell

Assistant Professor of Medicine, Brigham and Women's Faulkner Hospital
Boston, United States

Pratima Chowdary

Consultant Haematologist, Royal Free Hospital
London, United Kingdom

Radoslaw Kaczmarek

Assistant Research Professor of Pediatrics Wells Center for Pediatric Research, Indiana University School of Medicine
Indianapolis, United States

Renchi Yang

Head of Thrombosis and Hemostasis Centre
Institute of Hematology and Blood Diseases Hospital
Tianjin, China

Salome Mekhuzla

Director, Global Development, WFH
Montreal, Canada

Samantha Gouw

Pediatric Hematologist, Amsterdam UMC
Amsterdam, Netherlands

Sophie Susen

Director of the Department of Haemostasis & Transfusion, CHRU Lille
Lille, France

Steve Lentz

Henry Hamilton Chair in Hematology, The University of Iowa Carver College of Medicine
Iowa City, United States

Steve Pipe

Professor Pediatric Hematology/Oncology, Michigan Medicine Hemophilia/Coagulation
Ann Arbor, United States

Thomas Sannié

Honorary President, Association Française des Hémophiles
France

Ulrike Reiss

Director, Pediatric Hemophilia Treatment Center - St. Jude Children’s Research Hospital.
United States

SPONSORS

For more information on sponsorship opportunities for the 13th Global Forum, please contact our Corporate Relations Manager at [email protected].

The 13th edition of the WFH Global Forum is supported by funding from:

SILVER SPONSORS

COMMITTEE & SPEAKERS

pending

Assistant Professor

Thrombosis and Atherosclerosis Research Institute (TaARI) – McMaster University

Hamilton, Canada

Head of Thrombosis and Hemostasis Centre
Institute of Hematology and Blood Diseases Hospital
Tianjin, China

REGISTRATION INFORMATION

Note: the 13th WFH Global Forum is only offered in English.

The WFH Global Forum will take place in-person in Montreal, Canada. Registration will open in June. Please send an email to [email protected] for group registrations of 10 participants or more.

Category Registration fee (in USD)
Industry $1,000.00
Delegate $765.00
PAMs (professions allied to medicines) $465.00
Government agency $250.00
NMO staff or volunteer $250.00
Young researcher/students $250.00
PWBD/family member $150.00
  • Access to all sessions
  • Electronic access to the final program
  • Daily buffet breakfast
  • Daily coffee breaks
  • Daily lunch
  • Certificate of attendance (by request)
  • Welcome reception

Any registration change or cancellation request must be sent in writing to [email protected]. A confirmation of the change or cancellation will be forwarded to you. All requests are subject to the following conditions:

  • No name changes are permitted
  • Until Friday, October 13, 2023, a refund equivalent to 75% of the paid registration fee will be granted
  • After Friday, October 13, 2023, no refunds will be granted
  • Requests for refunds with regards to incorrect registration payments or incorrect category selection will not be considered
  • Non-attendance is considered to be a cancellation on the day of the event and will incur a 100% cancellation fee

For any registration inquiries, please contact [email protected].

RELEVANT RESOURCES

Interested in catching up on the discussions from GPAS 2021 and 2022? View recordings of select sessions on the WFH eLearning platform.

VENUE

Nestled in the heart of beautiful Montreal, the Fairmont Queen Elizabeth hotel is an iconic landmark that has been welcoming guests for over six decades. The hotel includes various dining options, state-of-the-art facilities, a fitness center, and a spa.

The hotel booking page will be available until October 13, 2023. After October 13, 2023, hotel rooms are subject to availability and rates cannot be guaranteed. Please send an email to [email protected] to check availability after October 13, 2023.

Nightly room rate: $279 USD (inclusive of all taxes and fees)

We look forward to welcoming you!

  • All fees and taxes
  • Continental breakfast
  • Complimentary standard high speed internet access
  • Complimentary access to the hotel’s wellness centre and pool

Any change or cancellation of your registration must be sent in writing to [email protected]. A confirmation of the reservation change or cancellation will be forwarded to you. All requests are subject to the following conditions:

  • No name changes are permitted. All name changes will be subject to the cancellation policy. Please do not contact the hotel directly.
  • For cancellations received after October 13, 2023, no refunds will be granted
  • Should you need to check out earlier than planned, no refunds will be granted

Registering for a group of 10 or more? Click here to download the group form. Please send the completed form to [email protected] no later than October 1, 2023.

TRAVEL

We are delighted to announce that Air Canada, Air France, and KLM have partnered with the WFH to offer exclusive flight discount rates of up to 15% for attendees of the WFH Global Forum. Take advantage of these discounted flight options and be part of the conversation at the Global Forum!

Booking your discounted flight with Air Canada, Air France, and KLM to attend the Global Forum is easy:

  1. Register for the WFH Global Forum
  2. Follow the flight booking instructions received in your registration confirmation email
  3. Enter the discounted rates from the email when booking your flight to Montreal, Canada
  4. Enjoy your flight!
  • The discounted rates are applicable only for travel to Montreal for the Global Forum
  • Discounted seats are subject to availability, so we recommend booking early to secure your preferred flights
  • The discounts may vary based on the class of travel and availability

For more information, please contact [email protected].

FAQ

Please contact [email protected] for more information.

QWho would benefit from attending GPAS?
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
QWill recordings be made available after the event?
AAll sessions will be made available on demand after the event.
QWill there be any live interpretation?
AThe event will feature live interpretation in Spanish, French, Arabic and Russian.
QWhen will I receive my login information to access the virtual event?
ALogin information will be sent to all registered attendees on July 4, 2023

EVENT NEWS

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Also available in: Français Español

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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Relevant resources

Resources from the Global Policy and access summit 2021

Other Resources

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.

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

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

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

Previous years

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

Quality of life scale

The outcomes of interest collected in the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and quality of life. The quality of life scale, EQ-5D-5L, is part of the WBDR extended data set. It is available in more than 130 languages and in different modes of administration.

If you would like a different language, please email us at [email protected].

Other available languages include

Amharic
Arabic (Algeria, Morocco, UAE)
English (Ghana, India, Jamaica, Kenya, Nigeria, and the Philippines)
French (Algeria, Belgium, and Morocco)
Hungarian
Malayalam
Nepali
Punjabi
Russian (Ukraine)

Serbian
Spanish (Argentina, Panama, Spain, and the U.S.A)
Swahili
Tagalog
Thai
Twi
Ukrainian
Urdu
Vietnamese

For more information, please visit: euroqol.org/eq-5d-instruments/eq-5d-5l-about.

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 - 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

Our history

The WFH was established in 1963 by Frank Schnabel, a Canadian businessman born with severe hemophilia A. He believed that patient organizations could be much more effective—and do more to represent the interests of people living with bleeding disorders—if they worked together. The first WFH Congress was held in Copenhagen, Denmark, on June 25, 1963, and was attended by representatives from 12 countries. Now, the WFH and our global network of national member organizations (NMOs) represent the interests of people with hemophilia and other inherited bleeding disorders in 147 nations.