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WFH Global Policy and Access Summit (GPAS)

The third edition of the WFH Global Policy and Access Summit (GPAS) will take place from July 6 to 7, 2023. Join 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 increasing access to diagnosis, treatment and care for people living with bleeding disorders. 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 July!

Also available in: English Français Español

Join us online at #MSKCongress

Global Policy and Access Summit

[email protected]

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









08:30 – 09:00
OPENING PLENARY: Towards equitable access

Join the opening plenary to hear about the GPAS objectives and the program highlights. Learn more about the WFH’s work in areas of improving equitable access to diagnosis, treatment and care for people with bleeding disorders, regardless of their bleeding disorder, gender and where they live.

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

Opening remarks – Towards equitable access for all
Cesar Garrido, President, World Federation of Hemophilia, Caracas, Venezuela

Keynote address
Clive Ondari, Director of Health Products Policy and Standards, World Health Organization, Geneva, Switzerland

09:00 – 10:00
EDUCATIONAL SESSION: Disparities in access to diagnosis and care: A global snapshot

Access to diagnosis and care varies widely from country to country, region to region. Join our experts as they highlight global disparities in identification and diagnosis, access to therapies, access to prophylaxis, and more, with a special focus on the barriers faced by people with hemophilia, von Willebrand’s disease and women and girls with bleeding disorders.

Chair
Rana Saifi, Regional Manager, Eastern Mediterranean, World Federation of Hemophilia, Montreal, Canada

Global disparities in access to diagnosis and care for PWBD
Alain Baumann, CEO, World Federation of Hemophilia, Montreal, Canada

Barriers in accessing diagnosis and care for people with VWD
Nathan Connell, Chief of Medicine, Brigham and Women’s Faulkner Hospital, Boston, United States

Barriers in accessing diagnosis and care for women and girls with bleeding disorders
Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation, Gibsonia, United States

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

Our National Member Organizations around the world are on the frontlines of advocacy for people with bleeding disorders. Join this session and hear more from our NMOs on some of the leading advocacy projects taking place in their countries to address the barriers in diagnosis and care. Get inspired as our featured presenters share their experience, lessons learned, and actionable recommendations you can implement today.

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

Advocating for the setting up of a prophylaxis network
Latifa Lamhene, Association Nationale des Hémophiles, Algeria

Path to prophylaxis in Egypt
Mohammed Soliman, Egyptian Society of Hemophilia, Egypt

Reduce the gap in diagnosis, treatment and care between women/girls and men/boys with BDs
Yannick Collé, Association Nationale des Hémophiles, France

Inclusion of haemophilia and other bleeding disorders patients into the National Council of a Persons with Diasbilities (NCPWD)
James Kago, Kenya Haemophilia Association, Kenya

Sudan: Sustaining access to care and treatment for patients with bleeding disorders during a fighting in April-May 2023
Nawal Eltayeb MD, Sudanese Hemophilia Society, Sudan

Advocating for a focus on women with bleeding disorders in Syria’s health care system
Tahani Ali MD, Syrian Hemophilia Society, Syria

All Copays Count Coalition
Bill Robie, National Hemophilia Foundation, United States

11 :15 – 12:15
EDUCATIONAL SESSION: Strategies to accelerate identification and diagnosis of PWBD: Diagnosis -First step to access care

The WFH estimates that over 70% of expected people living with hemophilia worldwide have not yet beenidentified and diagnosed. Join this session to discover key findings from the WFH NMO survey on barriers toidentification and diagnosis. Learn strategies to strengthen health care systems by looking at the role of primaryhealthcare, national screening programs, and recommendations from the WFH guidelines on hemophilia andVWD. Join the discussion as our panel of experts highlights successful outreach projects which have acceleratedidentification and diagnosis of PWBD.

Chair
Emna Gouider, Chief, Aziza Othmana Hospital- University Tunis El Mana, Tunis, Tunisia

Presentation of WFH NMO survey on barriers to identification and diagnosis
Juliana Hagembe, Outreach & Diagnosis Consultant, World Federation of Hemophilia, Nairobi, Kenya

Strengthening health systems to increase identification and diagnosis of PWBD
Adriana Velasquez Berumen, Team Lead Medical Devices and In Vitro Diagnostics, MDD, World Health Organization, Geneva, Switzerland

Panel discussion on strategies to accelerate identification and diagnosis of PWBD
Megan Adediran, Executive Director, Haemophilia Foundation of Nigeria, Kaduna, Nigeria
Mina (Kate) Hill, Haemophilia Nurse Co-Ordinator, South African Haemophilia Foundation, Cape Town, South Africa
Tahani Ali, Professor, Hematology & blood transfusion, Faculty of medicine, Damascus University, Damascus, Syria

12:15 – 12:30
BREAK
12 :30 – 13:30
STAKEHOLDER DISCUSSIONS: Towards equitable access

* By invitation only

07 :00 – 08 :00
STAKEHOLDER DISCUSSIONS: Towards equitable access

* By invitation only

08:30 – 09:30
EDUCATIONAL SESSION: Strengthening organization of care for bleeding disorders

How to ensure that patient organizations have a seat at the decision-making table? Join our keynote expert to uncover concrete strategies for successful advocacy to secure sustainable government investment for bleeding disorders. Learn about the multi-prong approach to strengthening care delivery systems by looking at WFH guidelines on national organization of care and recommendations on effective care delivery, national bleeding care programs and committees, and the vital role of the NMO in advancing the process. Learn about a captivating case study from Brazil which will cover the government perspective on developing national bleeding disorder programs.

Chair
Ekawat Suwantaroj, Vice President, Thai Hemophilia Patient Club – National Hemophilia Foundation of Thailand, Bangkok, Thailand

Strategies to increase government investment in bleeding disorders
Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation, Gibsonia, United States

Strengthening care delivery systems
Alok Srivastava, Professor, Christian Medical College, Vellore, India

Government perspective on national bleeding disorder programs and/or a country case on including bleeding disorders in health policies
Erich Vinicius de Paula, Ministry of Health, Brazil

09:30 – 10:30
EDUCATIONAL SESSION: Tackling inequities in access in an era oftherapeutic advances

Access to current therapies varies greatly around the world. The session will begin with an overview of currently available therapies and what’s coming down the pipeline. Following this, an expert panel discussion will address the challenges of increasing equitable access in the fast-changing treatment landscape. Join the conversation to learn more about developments in novel therapies and what strategies should be put in place to increase equitable access to existing and novel therapies.

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

Overview of existing and novel therapies in bleeding disorders
Len Valentino, CEO, National Hemophilia Foundation, New York, United States

Panel discussion on increasing equitable access in era of a fast-changing treatment landscape
Brian O’Mahony, CEO, Irish Haemophilia Society, Dublin, Ireland
Len Valentino, CEO, National Hemophilia Foundation, New York, United States
Cedric Hermans, Head, Hemophilia Center, Cliniques Universitaires Saint-Luc, Woluwe-Saint-Lambert, Belgium
David Page, Director of Health Policy, Canadian Hemophilia Society, Montreal, Canada

10:45 – 11:45
WFH HIGHLIGHT SESSION: Increasing equitable access: PACT program

Launched in 2021, the WFH Path to Access to Care and Treatment (PACT) Program is designed to improve outreach and diagnosis and increase access to sustainable care for PWBD. Where are we two years in? Discover the progress made since 2021 towards achieving the PACT program goals. Learn more about the PACT Advocacy Academy 8-month long course and hear real-life stories from NMOs engaged in the PACT program as they share their outcomes and the impact of their participation on the bleeding disorders community in their country.

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

PACT Program objectives and 2 year progress
Guada Lagrada, Head – Regional Development, World Federation of Hemophilia, Montreal, Canada

PACT Advocacy Academy
Julia Chadwick, Education Materials Coordinator , World Federation of Hemophilia, Montreal, Canada

Panel discussion: Impact stories from PACT countries
Juan Andrés Pereira de Souza, President, Asociación De Hemofilia Del Uruguay, Montevideo, Uruguay
Flerida Hernandez, Physician, Hemophilia Association of the Philippines for Love and Service Inc., Manila,Philippines
Premroop Alva, President, Hemophilia Federation (India), New Delhi, India
Abdoulaye Loum, President, Association Sénégalaise des Hémophiles (ASH), Dakar, Senegal

11 :45 – 12:45
EDUCATIONAL SESSION: Shared decision-making model in health care

Learn about the SDM model and its value in enabling PWH to make informed treatment decisions alongside their healthcare team. Discover concrete examples of its successful application in other types of disease. Witness the global debut of the new WFH Shared Decision-Making tool for hemophilia. Learn
how the the SDM model can be applied in clinical practice.

Chair
Courtney Thornburg, Medical Director, Hemophilia and Thrombosis Treatment Center at Rady Children’s Hospital, San Diego, United States

Presentation on shared decision-making model in healthcare and its value
Mark Skinner, President and CEO, Institute for Policy Advancement Ltd, Washington, United States

WFH shared decision-making tool
Donna Coffin, Director, Research & Education, World Federation of Hemophilia, Montreal, Canada

pplying the shared decision-making model in clinical practice
Victor Jiménez-Yuste, Head of department, Hospital La Paz, Madrid, Spain

Applying the shared decision-making model as a patient
Bradley Rayner, Head of Programmes, South African Haemophilia Foundation, Cape Town, South Africa

12:45 – 13:00
CLOSING PLENARY

Alain Baumann, CEO, World Federation of Hemophilia, Montreal, Canada
Salome Mekhuzla, Director – Global Development, World Federation of Hemophilia, Montreal, Canada

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

SPONSORS

The third 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 U.S.A.

SILVER SPONSORS

COMMITTEE & SPEAKERS

Meet the members of the WFH Global Policy and Advocacy Group who are overseeing the development of the GPAS 2023 Program:  

President
Association Sénégalaise des Hémophiles (ASH)
Dakar, Senegal

Team Lead Medical Devices and In Vitro Diagnostics, MDD,
World Health Organization,
Geneva, Switzerland

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

Professor

Christian Medical College

India

Director, State Government Relations
National Hemophilia Foundation
United States

Head of Programmes
South African Haemophilia Foundation
South Africa

CEO
Irish Haemophilia Society
Dublin, Ireland

Head, Hemophilia Center
Cliniques Universitaires Saint-Luc
Germany

President World Federation of Hemophilia
Caracas, Venezuela

Director of Health Products Policy and Standards,
World Health Organization,
Geneva, Switzerland

Medical Director

Hemophilia and Thrombosis Treatment Center at Rady Children’s Hospital-San Diego

United States

David Page
Director of Health Policy
The Canadian Hemophilia Society (CHS)

Chief Operating Officer
National Bleeding Disorders Foundation
Gibsonia, United States

Director, Research & Education
World Federation of Hemophilia
Canada

Vice President of the Thai Hemophilia Patient Club
Thai Hemophilia Society
Bangkok, Thailand

Chief
Biological Hematology Department,
Aziza Othmana Hospital- University Tunis El Mana,
Tunis, Tunisia

Medical Consultant of the National Program for Hereditary Bleeding Disorders
Ministry of Health in Brazil
Brazil

Physician
Hemophilia Philippines (HAPLOS Community) Foundation, Inc.
Manila, Philippines

Head, Regional Development
World Federation of Hemophilia
Montreal, QC

Haemophilia A
board Member of Kenya Haemophilia Association
Kenya

President
Asociación De Hemofilia Del Uruguay
Montevideo, Uruguay

Education Materials Coordinator,
World Federation of Hemophilia
Canada

Outreach & Diagnosis Consultant,
World Federation of Hemophilia,
Nairobi, Kenya

Member, Association Nationale des Hémophiles, Algeria

CEO
National Hemophilia Foundation
United States

President and CEO
Institute for Policy Advancement Ltd
United States

Lay Member, Board of Directors
World Federation of Hemophilia
Zagreb, Croatia

Executive Director
Haemophilia Foundation of Nigeria
Kaduna, Nigeria

Haemophilia Nurse Co-Ordinator
South African Haemophilia Foundation
South Africa

Member
Egyptian Society of Hemophilia
Egypt

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

Member
Sudanese Hemophilia Care Association
Sudan

President,
Hemophilia Federation (India),
India

Regional Manager, Eastern Mediterranean,
World Federation of Hemophilia,
Montreal, Canada

Director Global Development
World Federation of Hemophilia
Montreal, Canada

Professor, M.D.
Hematology & blood transfusion, Faculty of medicine, Damascus University
Syria

Associate Professor
Universidad Autónoma de Madrid
Spain

Co-Leader
French NMO WBD Committee
Six-Fours-les-Plages, France

REGISTRATION INFORMATION

Register now for this free virtual-only event! Registration grants you access to all sessions on July 6 and 7, 2023, except for stakeholder discussions, which are by invitation only.

Please contact [email protected] for more registration information.

The WFH can offer events like GPAS for free thanks to the support given to us by our generous donors. By donating to the WFH you will be supporting national and global advocacy efforts, so that all people with bleeding disorders are given a voice. Your support is vital—please consider donating today at give.wfh.org

RELEVANT RESOURCES

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

TRAVEL

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 available on demand for 60 days, until August 31, 2023. You can access them on this same event platform. Session recordings in English will appear within 24 hours. All other languages will be available few weeks after the end of 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

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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.

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

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

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 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

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
  • Physiotherapy