This two-day virtual event will address issues related to the safety and supply of treatment products for bleeding disorders, and brings together patient groups, regulators, representatives from industry, and not-for-profit fractionators, as well as doctors who treat people with bleeding disorders.

Place your cursor over the sessions in the grid, and click 'Learn more' for session descriptions.

Day 1 | November 4: SAFETY, SUPPLY AND ACCESS TO TREATMENT PRODUCTS

9:00 AM - 9:10 AM

WELCOME REMARKS
Glenn Pierce, Vice-President Medical, World Federation of Hemophilia, San Diego, United States
Radoslaw Kaczmarek, Coagulation, Products Safety, Supply and Access Committee, World Federation of Hemophilia, Indianapolis, United States

9:10 AM - 10:30 AM

PLASMA AND ACCESS
Moderator
Mark Skinner, President and CEO, Institute for Policy Advancement Ltd, Washington, United States

10:30 AM - 11:50 AM

SAFETY
Moderator
Brian O'Mahony, CEO, Irish Haemophilia Society, Dublin, Ireland

11:50 AM - 12:10 PM

Break

12:10 PM - 1:30 PM

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

1:30 PM - 2:45 PM

VON WILLEBRAND DISEASE
Moderator
Baiba Ziemele, President, Latvia Hemophilia Society, Riga, Latvia

 

Day 2 | November 5: RESEARCH AND HEMOPHILIA TREATMENT

9:00 AM - 10:20 AM

REAL WORLD DATA
Moderator
Alfonso Iorio, Professor, Department of Health Research Methods, Evidence, and Impact (HEI), McMaster University, Hamilton, Canada

10:20 AM - 11:40 AM

GENE THERAPY
Moderator
David Lillicrap, Professor, Queen's University, Kingston, Canada

11:40 AM - 12:00 PM

Break

12:00 PM - 1:45 PM

LATEST UPDATES FROM CLINICAL TRIALS
Moderators
Glenn Pierce, Vice-President, Medical, World Federation of Hemophilia, La Jolla, United States
Flora Peyvandi, Professor of Internal Medicine, Università Degli Studi di Milano, Milan, Italy

1:45 PM - 2:00 PM

CLOSING REMARKS

ALL TIMES ARE LISTED IN EASTERN TIME (ET)
PROGRAM IS SUBJECT TO CHANGE

 

PLASMA AND ACCESS

Moderator

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


Geopolitical access to treatment and COVID-19 impact
Brian O'Mahony, CEO, Irish Haemophilia Society, Dublin, Ireland

Plasma safety and residual pathogen risk with plasma-derived clotting factors
Svetoslav Slavov, Young Investigator FAPESP, Hemocentro Ribeirão Preto, São Paulo, Brazil

DDAVP Intranasal shortage and alternatives
Steve Pipe, Professor of Pediatrics and Pathology, University of Michigan, Ann Arbor, United States
Dan Hart, Consultant Haematologist, The Royal London Hospital Haemophilia Centre, United Kingdom (TBC)
Magdy El-Ekiaby, Senior Consultant Hematology, Shabrawishi Hospital Hemophilia Centre, Cairo, Egypt

Plasma: donor recruitment, recent MSM updates, and plasma collection in the UK
Thomas Kreil, Head of Global Pathogen Safety, Takeda, Vienna, Austria

SAFETY

Moderator

Brian O'Mahony, CEO, Irish Haemophilia Society, Dublin, Ireland


What constitutes a safety issue: what should be reported? when should reports be issued? by whom and to whom?
Len Valentino, CEO, National Hemophilia Foundation, New York, United States

Non-replacement therapies and risk of thrombosis
Mike Makris, Professor, University of Sheffield, United Kingdom

Post hepatitis C monitoring and long term follow-up
Bruce Luxon, Chair, Department of Medicine - Georgetown University, Washington, D.C, United States

ATHN-7: long term follow-up of non-factor replacement therapies
Michael Recht, Chief Science Officer, American Thrombosis and Hemostasis Network, Rochester, United States (TBC)

TREATMENT QUESTIONS

Moderator

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


Extravascular distribution of factor 9
Darrel Stafford, Professor of Biology, University of North Carolina, Chapel Hill, United States

Extravascular pool of factor 9: clinical implications for EHLs
Robert Sidonio, Pediatric Hematologist/Oncologist, Aflac Cancer and Blood Disorders, Atlanta, United States

Starting emicizumab immediately: How should 50 EDs of PUPs be planned in the era of emicizumab?
Gili Kenet, Director, Israel National Hemophilia Center and Thrombosis Institute, Ramat Gan, Israel

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

VON WILLEBRAND DISEASE

Moderator

Baiba Ziemele, President, Latvia Hemophilia Society, Riga, Latvia


Novel treatment modalities for VWD
Cécile Denis, Director Unit 1176, INSERM/Université Paris-Sud/Université Paris-Saclay, Paris, France

Moving from the new guidelines to implementation - learning from hemophilia and not having undue delay
James O'Donnell, Clinical Senior Lecturer, Trinity College, Dublin, Ireland

Limitations of the VWD guidelines
Paula James, Professor Hematologist, Department of Medicine, Queen's University, Kingston, Canada

New initiatives in VWD diagnostic tests
Angela Weyand, Assistant Professor, Department of Pediatrics, University of Michigan, Ann Arbor, United States

REAL WORLD DATA

Moderator

Alfonso Iorio, Professor, Department of Health Research Methods, Evidence, and Impact (HEI), McMaster University, Hamilton, Canada


WFH Data Driven Indicators of Care
Donna Coffin, Director, Research & Education, World Federation of Hemophilia, Canada

Humanitarian Aid initiatives based upon the WFH Treatment Guidelines
Jay Martin, Development & Training Manager - Humanitarian Aid, World Federation of Hemophilia, Canada

Measuring outcomes with WBDR and GTR
Donna Coffin, Director, Research & Education, World Federation of Hemophilia, Canada

Annual Global Survey: capturing new products
Jeff Stonebraker, Associate Professor, North Carolina State University, Raleigh, United States

How patient reported level data can be used to compare therapies before and after switching
Martin Scott, Consultant Haematologist, UK National Haemophilia Database, Manchester, United Kingdom

GENE THERAPY

Moderator

David Lillicrap, Professor, Queen's University, Kingston, Canada


Importance of integration as a potential safety risk or unknown
Paul Batty, Post Doctoral Fellow, Department of Pathology and Molecular Medicine, Queen's University, Kingston, Canada

Duration of steroid therapy and its complications in gene therapy
Margareth Ozelo, Professor, Hemocentro Unicamp, University of Campinas, Brazil

Development of hepatocellular carcinoma
Heiner Wedemeyer , Professor and Chairman of the Department of Gastroenterology, Hepatology and Endocrinology, Hannover Medical School, Germany

Review on measurement of FVIII and IX post gene therapy
Annette Bowyer, Senior Biomedical Scientist, Sheffield Teaching Hospitals NHS FT, United Kingdom

WFH Network

WFH
Information on our organization and our programs.
WFH USA
The US branch of the World Federation of Hemophilia.
eLearning Platfrom
The one-stop place to go for hemophilia resources.
World Hemophilia News
News related to WFH and Hemophilia around the world.

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  • Global Forum Secretariat
    World Federation of Hemophilia
    1425, boul. René-Lévesque Ouest, Bureau 1200 
    Montréal, Québec H3G 1T7 Canada
    Tel.: +1 (514) 875-7944
    Fax: +1 (514) 875-8916
    Email: [email protected]