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WFH Global Summit on Women and Girls with Bleeding Disorders

The WFH is pleased to announce that the 3rd WFH Global Summit on Women and Girls with Bleeding Disorders (WGBD) will be held virtually on September 28 and 29, 2023 from 9:00AM to 2:00PM (EDT). The chosen theme for this edition of the summit will be Equity and Access to care for women and girls with bleeding disorders.

This two-day virtual Global Summit on WGBD will serve as a platform:

  • To increase understanding of bleeding disorders in women and girls, including gender differences and challenges faced by this population.
  • To identify and address barriers to access and care for women and girls with bleeding disorders, including stigma and discrimination.
  • To share strategies for improving equity in access to diagnosis and care for WGBD, including a patient-centered and multidisciplinary approach, gaps in data collection and research, guidelines utilization, and advocacy for policy change and funding.
  • To strengthen the capacity of patient organizations in advocating for the needs of this population.

 

Healthcare providers, people living with bleeding disorders, family members, national member organization leaders, and other stakeholders will come together to discuss several topics including, the importance of data and the use of guidelines for advocacy purposes, comprehensive care for WGBD, the role of patient organizations and male figures within the family, amongst others.

All sessions now available on demand until November 27, 2023. Join us online today!

Already registered? Click here to access sessions on demand.

Not yet registered? Click here to register.

Also available in: Français Español

Join us online at #MSKCongress

Women and Girls with Bleeding Disorders

[email protected]

AGENDA

This two-day virtual event will feature plenary, educational sessions, and panels—all focusing on topics related to Equity and Access to care for women and girls with bleeding disorders.

Days: September 28 and 29, 2023 from 9:00 AM to 2:00 PM (EDT)

Calendar









09:00 – 09:30
OPENING PLENARY

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

Opening / Welcome remarks
Andreina Tovar, Head – Global Training Programs, World Federation of Hemophilia, Montreal, Canada

Welcome from president
Cesar Garrido, President, World Federation of Hemophilia, Caracas, Venezuela

Testimonials: What having or not having access means to WGBDs
Yannick Collé, co-leader, French NMO Women’s Committee, Six Fours Les Plages, France
Valeria De Los Ángeles Colon Quiles, Puerto Rican Association of Hemophilia, San Juan, Puerto Rico

Perspective on EQUITY AND ACCESS
Dawn Rotellini, Chief Operating Officer, National Hemophilia Foundation, Gibsonia, United States

Testimonial
Anna, member of the Danish Haemophilia Society

09:30 – 10:30
Equity for women: Role of patient organizations

Session’s objectives:

  1. Explain the role of NMOs in advocating for equity and access for women and girls with bleeding disorders globally.
  2. Identify strategies utilized by NMOs to promote treatment, care, support, and education for women and girls with bleeding disorders.
  3. Discuss the challenges faced by NMOs in promoting equity and access for women and girls with bleeding disorders and suggest potential solutions to these challenges.

Chair
Anupama Pattiyeri, Doctor, Hemophilia Society Calicut Chapter, Kozhikode, India

WFH global NMOs survey on WGBD
Johanne Ouedraogo, Program Coordinator, World Federation of Hemophilia, Montreal, Canada

Equity for women: Role of patient organizations – Around the world
Salome Mekhuzla, Director – Global Development, World Federation of Hemophilia, Montreal, Canada

Advocacy case: Australia
Suzanne O’Callaghan, Haemophilia Foundation Australia

Advocacy case: Colombia
Alexandra Robledo Riaga, Colombian League of Hemophilia and other Bleeding Disorders – Colhemofílicos

10:30 – 10:45
BREAK
10:45 – 12:00
From guidelines to individual care

Session’s objectives:

  1. Describe the importance of using guidelines for the diagnosis and management of bleeding disorders in women and girls, and their potential impact on equity and access to care.
  2. Identify key components of effective guidelines for bleeding disorder care in women and girls and discuss their application in clinical practice.
  3. Present example of countries that have used guidelines as an advocacy tool for improving equity and access for women and girls with bleeding disorders.

Chair
Lauren Phillips, Board Member – Youth, Haemophilia Foundation of New Zealand, Greymouth, New Zealand

Combining the tools we have for access
Robert Sidonio, Pediatric Hematologist/Oncologist, Aflac Cancer and Blood Disorders, Sandy Springs, United States

From global guidelines to individual care
Nathan Connell, Chief of Medicine, Brigham and Women’s Faulkner Hospital, Boston, United States

Experience from Canada: Using Standards of Care to Support your Advocacy
Sarah Ford, CEO, Canadian Hemophilia Society, Montreal, Canada

12:00 – 12:30
BREAK
12:30 – 13:30
PANEL: What men should know about WGBD

Session’s objectives:

  1. Discuss the importance of the role that men can play to support WGBD
  2. Identify the challenges faced by men who are fathers, brothers, partners of WGBD in supporting them.
  3. Discuss medical signs and symptoms in WGBD (hematologist) and approach as a male figure within the family.
  4. Identify strategies to improve understanding and support for WGBD from male partners, family members, or healthcare providers.

Chair
Patrick James Lynch, CEO, Believe Limited, Los Angeles, United States

Welcome from the chair
Patrick James Lynch, CEO, Believe Limited, Los Angeles, United States

PANEL:

NMO leader who supports WGBD
Masood Malik, Founder & Advisor, Hemophilia Foundation-pakistan [Hfp], Lahore, Pakistan

Partner of a woman with a bleeding disorder
Gernot Radlingmayr, Austria

Hematologist
Miguel Escobar, Professor, University of Texas, Texas, United States

13:30 – 13:45
DAY 1 WRAP-UP

Chair
Baiba Ziemele, Chairwoman of the Board, Latvia Hemophilia Society, Riga, Latvia

09:00 – 09:15
Come and meet the WGBD Committee

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

Lauren Phillips, Board Member – Youth, Haemophilia Foundation of New Zealand, Greymouth, New Zealand

Baiba Ziemele, Chairwoman of the Board, Latvia Hemophilia Society, Riga, Latvia

Anupama Pattiyeri, Doctor, Hemophilia Society Calicut Chapter, Kozhikode, India

Roshni Kulkarni, Professor, Michigan State University Center for Bleeding and Clotting disorders, Michigan, United States Tahira Zafar, Prof. of Haematology; Director HTC; Chairperson; Medical Advisory Board, Pakistan Haemophilia Patients Welfare Society, Rawalpindi, Pakistan

09:15 – 10:15
“It is a woman thing…or is it?”: Overcoming barriers

Session’s objectives:

  1. Identify common psychological and social challenges faced by women and girls with bleeding disorders and recommend coping strategies to overcome them.
  2. Suggest strategies for developing self-advocacy skills used to promote equity and access for women and girls with bleeding disorders.
  3. Give a platform to women and girls with bleeding disorders to share their experiences on self-advocating for care.

SPANISH GROUP

Chair
Andreina Tovar, Head – Global Training Programs, World Federation of Hemophilia, Montreal, Canada

Introduction of moderators
Andreina Tovar, Head – Global Training Programs, World Federation of Hemophilia, Montreal, Canada

Mental health and coping strategies
Susan Cutter, Social Worker, Hospital of the University of Pennsylvania, Philadelphia, United States

Discussion: Hearing experiences and self-advocacy
Silvina Graña, Clinical Psychologist, Fundación de la Hemofilia de la Argentina, Buenos Aires, Argentina
Noemy Esther Diaz-Burgos, Policy & Government Affairs Intern, Hemophilia Federation of America, Florida, United States

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


FRENCH GROUP

Chair
Emna Goudier, Hematologist, Aziza Othmana Hospital- University Tunis El Mana, Tunis, Tunisia

Introduction of moderators
Emna Goudier, Hematologist, Aziza Othmana Hospital- University Tunis El Mana, Tunis, Tunisia

Mental health and coping strategies
Susan Cutter, Social Worker, Hospital of the University of Pennsylvania, Philadelphia, United States

Discussion: Hearing experiences and self-advocacy
Mathilde Dien, Ancienne membre, Commission femmes de l’AFH, Paris, France
Minackshi Dhurmoo-Luchmun, Program Coordinator, Haemophilia Association of Mauritius, Quatre Bornes, Mauritius

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


ENGLISH GROUP

Chair
Baiba Ziemele, Chairwoman of the Board, Latvia Hemophilia Society, Riga, Latvia

Introduction of moderators
Baiba Ziemele, Chairwoman of the Board, Latvia Hemophilia Society, Riga, Latvia

Mental health and coping strategies
Susan Cutter, Social Worker, Hospital of the University of Pennsylvania, Philadelphia, United States

Discussion: Hearing experiences and self-advocacy – group 1
Susan Cutter, Social Worker, Hospital of the University of Pennsylvania, Philadelphia, United States
Christina Vösl, Patient Representative, Austria

Discussion: Hearing experiences and self-advocacy – group 2
Meila Roy, Clinical Psychologist, Southern Haemophilia Network, Haemophilia and Thrombosis Centre, Uplands House, Basingstoke & North Hampshire Hospital, England, United Kingdom
Baiba Ziemele, Chairwoman of the Board, Latvia Hemophilia Society, Riga, Latvia

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

10:15 – 10:30
BREAK
10:30 – 11:15
On both sides of the placenta: Impact of bleeding on the fetus

Session’s objectives:

  1. Explain the impact of bleeding disorders in pregnant women on fetal health.
  2. Discuss strategies for optimizing fetal health outcomes.
  3. Present the importance of multidisciplinary care in promoting optimal maternal and fetal outcomes in women with bleeding disorders.

Chair
Roshni Kulkarni, Professor, Michigan State University Center for Bleeding and Clotting disorders, Michigan, United States

Introduction of speakers
Roshni Kulkarni, Professor, Michigan State University Center for Bleeding and Clotting disorders, Michigan, United States

Hemophilia and pregnancy
Jill Johnsen, Physician Scientist, Bloodworks Research Institute, Seattle, United States

Hemophilia and the neonate
Shannon Meeks, Professor of Pediatrics, Emory University, Atlanta, United States

11:15 – 11:30
BREAK
11:30 – 12:30
PANEL: Importance of the multidisciplinary team at every stage of life

Session’s objectives:

  1. Identify key members of the multidisciplinary team involved in the care of women and girls with bleeding disorders and explain their roles and responsibilities.
  2. Discuss the importance of coordination and collaboration among members of the multidisciplinary team in promoting optimal outcomes for women and girls with bleeding disorders.
  3. Present a concrete case-study of a woman with a bleeding disorder successfully managed by a multidisciplinary team and discuss approach.

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

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

Case-study presentation
Marlène Beijlevelt, MANP, Amsterdam University Medical Centre, Amsterdam, The Netherlands

PANEL:

Nurse (chair of the nurse committee)
Marlène Beijlevelt, MANP, Amsterdam University Medical Centre, Amsterdam, The Netherlands

Midwife
Anne-Louise Cruickshank, Haemophilia coordinator, UCT/SAHF, Cape Town, South Africa

OBGYN from FIGO
Hilary Critchley, Head, – Deanery of Clinical Sciences, Edinburgh Medical School, Edinburgh, United Kingdom

Psychotherapist / Psychologist
Richa Mohan, Director, Empowering Minds Society for Research and Development, Ghaziabad, India

Hematologist / Pediatrician
Megan Brown, Director of Young Women’s Bleeding Clinic, Emory University, Atlanta, United States

12 :30 – 12:45
BREAK
12:45 – 13:45
Purposeful inclusion of women in research

Session’s objectives:

  1. Explain the importance and benefits of including women and girls with bleeding disorder in research.
  2. Identify challenges to including women and girls with bleeding disorder in research especially in countries with limited resources.
  3. Identify strategies to be gender sensitive in clinical trials.

Chair
Tahira Zafar, Prof. of Haematology; Director HTC; Chairperson; Medical Advisory Board, Pakistan Haemophilia Patients Welfare Society, Rawalpindi, Pakistan

Challenges of WGBD in research
Roshni Kulkarni, Professor, Michigan State University Center for Bleeding and Clotting disorders, Michigan, United States

Research in WGBD in limited resources countries
Tahira Zafar, Prof. of Haematology; Director HTC; Chairperson; Medical Advisory Board, Pakistan Haemophilia Patients Welfare Society, Rawalpindi, Pakistan

How to be gender sensitive in clinical trials?
Angela Weyand, Associate Professor, University of Michigan Medical School, Michigan, United States

WFH data collection on WGBD
Ellia Tootoonchian, Data & Research Manager, World Federation of Hemophilia, Montreal, Canada

13:45 – 14:00
CLOSING PLENARY: KEY TAKEAWAYS FROM THE SUMMIT

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

Simultaneous interpretation available in Spanish, French, Russian & Arabic

Program is subject to change

SPONSORS

The 3rd WFH Global Summit on Women and Girls with Bleeding Disorders is supported by funding from Hemophilia of Georgia, the National Bleeding Disorders Foundation and Novo Nordisk.

COMMITTEE & SPEAKERS

President – Bogota Chapter
Colombian League of Hemophilia and other Bleeding Disorders – Colhemofílicos
Bogota, Colombia.

Head, Global Training Programs
World Federation of Hemophilia
Montreal, Canada

Associate Professor
Department of Pediatrics, University of Michigan
United States

Haemophilia coordinator
Uct/sahf
Cape Town, South Africa

Doctor
Hemophilia Society Calicut Chapter
Kozhikode, India

President
Latvia Hemophilia Society
Latvia

President World Federation of Hemophilia
Caracas, Venezuela

Patient Representative
Austria

Chief Operating Officer
National Bleeding Disorders Foundation
Gibsonia, United States

Director, Research & Education
World Federation of Hemophilia
Canada

Data & Research Manager
World Federation of Hemophilia
Canada

Hematologue
Aziza Othmana Hospital- University Tunis El Mana
Tunis, Tunisia

Head, Deanery of Clinical Sciences
Edinburgh Medical School
Edinburgh, United Kingdom

Physician Scientist
Bloodworks Research Institute
United States

Program Coordinator
World Federation of Hemophilia
Montreal, Canada

Board Member – Youth
Haemophilia Foundation of New Zealand
Greymouth, New Zealand

Hemophilia and Research Nurse
Amsterdam University Medical Center
Netherlands

Founder & Advisor
Hemophilia Foundation-pakistan [HFP]
Lahore, Pakistan

Ancienne membre
Commission femmes de l’AFH
Paris, France

Senior Associate in Pediatric Hematology
Emory University
Atlanta, United States

Clinical Psychologist
Southern Haemophilia Network, Haemophilia and Thrombosis Centre, Uplands House, Basingstoke & North Hampshire Hospital
England, United Kingdom

Professor
University of Texas
United States

Program Coordinator
Haemophilia Association of Mauritius
Quatre Bornes, Mauritius

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

Policy & Government Affairs Intern
Hemophilia Federation of America
Florida, United States

 

CEO
Believe Limited
United States

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

Director
Empowering Minds Society for Research and Development
Ghaziabad, India

Pediatric Hematologist/Oncologist
Aflac Cancer and Blood Disorders
Sandy Springs, United States

Professor & Former Director
Michigan State University Centers for Bleeding and Clotting Disorders
East Lansing, United States

Director Global Development
World Federation of Hemophilia
Montreal, Canada

CEO
Canadian Hemophilia Society
Montreal, Canada

Professor of Pediatrics
Emory University
Atlanta, United States

Clinical Psychologist
Fundación de la Hemofilia de la Argentina
Buenos Aires, Argentina

Social Worker
Hospital of the University of Pennsylvania
United States

Policy Research and Education Manager
Haemophilia Foundation Australia
Melbourne, Australia

Director
Pakistan Haemophila Patients welfare Society
Pakistan

Puerto Rican Association of Hemophilia
San Juan, Puerto Rico

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 September 28 and 29, 2023.

Please contact [email protected] for more registration information.

The WFH can offer events like the Global Summit on WGBD 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 latest webinars and educational resources of the WFH on women and girls with bleeding disorders? View recordings of select sessions on the WFH eLearning platform.

TRAVEL

Q Who would benefit from attending the Global summit on WGBD?
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 for 2 months following the event.
Q Will there be any live interpretation?
A The event will feature live interpretation in Spanish, French, Arabic and Russian.
Q When will I receive my login information to access the virtual event?
A Login information will be sent to all registered attendees on September 26, 2023

Please contact [email protected] for more information.

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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.

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Hemophilia Alliance

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

Israel - Tel Hashomer

Year of IHTC designation: 1993

National Hemophilia Center, Tel Hashomer
Sheba Medical Center

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic surgery
  • Nursing
  • Physiotherapy
  • Dental care
  • Laboratory diagnosis (not genetics)
  • Psychology

South Africa - Johannesburg

Year of IHTC designation: 2016

Haemophilia Comprehensive Care Centre
Charlotte Maxeke Johannesburg Academic Hospital

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis and hemostasis
  • Physiotherapy

Singapore - Singapore

Year of IHTC designation: 2002

Singapore General Hospital Haemophilia Treatment Clinic

Areas of Specialty

  • Adult hematology
  • Laboratory diagnosis
  • Nursing
  • Dental care
  • Orthopedic care (no surgeries)
  • Physiotherapy
  • Psychology

Senegal - Dakar

Year of IHTC designation: 2016

Centre International de Traitement de l’Hémophilie (CITH) de Dakar
Centre National de Transfusion Sanguin (CNTS)

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Nursing
  • Blood banking
  • Physiotherapy

Russia - Moscow and St. Petersburg

Year of IHTC designation: 2010

National Medical Research Center of Hematology of the Russian Academy of Medical Sciences

Areas of Specialty

  • Adult hematology
  • Nursing
  • Orthopedic surgery

Netherlands - Utrecht

Year of IHTC designation: 1996

Van Creveldkliniek
University Medical Centre Utrecht

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hematology
  • Nursing
  • Orthopedic care and surgery
  • Physiotherapy/Occupational therapy

Japan - Nara

Year of IHTC designation: 1998

Nara Hemophilia Centre
Nara Medical University

Areas of Specialty

  • Adult and pediatric hematology
  • Orthopedic care and surgery
  • Laboratory diagnosis and Molecular genetics
  • Physiotherapy

Italy - Milan

Year of IHTC designation: 1972

Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre
Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico

Areas of Specialty

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

India - Mumbai

Year of IHTC designation: 2000

National Institute of Immunohaematology (ICMR) and KEM Hospital

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics
  • Dental care
  • Orthopedic care
  • Physiotherapy

India - Vellore

Year of IHTC designation: 2000

Christian Medical College, Vellore

Areas of Specialty

  • Adult and pediatric hematology
  • Laboratory diagnosis and hemostasis
  • Molecular genetics with antenatal diagnosis
  • Nursing
  • Musculoskeletal management – physical and occupational therapy with physiatry
  • Orthopedic care and surgery
  • Blood banking
  • Dental care
  • Psychology/Social services
  • Antenatal diagnosis

Sweden - Malmö

Year of IHTC designation: 1976

Malmö Centre for Thrombosis and Haemostasis
Department for Hematology and Coagulation Disorders, Skåne University Hospital
Skåne University Hospital

Areas of Specialty

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

France - Paris

Year of IHTC designation: 1972

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

Areas of Specialty

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

Egypt - Cairo

Year of IHTC designation: 2015

Shabrawishi Hospital, Egyptian Society of Hemophilia, and Cairo University