WFH Gene Therapy Registry – Basics of hemophilia, gene therapy, and long-term data collection – Italian
This document is an introductory guide to the World Federation of Hemophilia (WFH) Gene Therapy Registry (GTR). It answers basic questions about the registry, its purpose, and what participants can expect. The guide is designed to help those who receive gene therapy for hemophilia and their care teams to decide if they should participate in […]
Practical Education on Bleeding Disorders: Knowledge for All | WFH webinar series | December 15 2022
Listen to this 2-hour webinar presented on December 15, 2022, to learn about global topics related to bleeding disorders, with a focus on comorbidities associated with hemophilia. Patricia Cabré (Spain), Adolfo Llinas (Colombia), Luigi Solimeno (Italy), Radoslaw Kaczmarek (U.S.A.), Catherine Hayward (Canada), and Andra James (U.S.A.) presented practical information on bleeding disorders, including resilience and […]
Report on the Annual Global Survey 2021
The Report on Annual Global Survey (AGS) includes demographic and treatment data, providing a global snapshot of people with hemophilia, von Willebrand disease, other rare factor deficiencies, and inherited platelet disorders around the world.
Barriers to Accessing Care for Women and Girls with Bleeding Disorders | September 22 2022
Listen to this 90-minute webinar presented on September 22, 2022, to learn about how to address challenges faced by Women and Girls with Bleeding Disorders in accessing care and treatment and potential solutions. Issues like late diagnosis, lack of data, cultural taboos, and sexism has been discussed as part of the program and a diverse […]
WFH highlight sessions and general plenaries | WFH World Congress 2022
In these sessions from the WFH 2022 World Congress, listen to Cesar Garrido, Glenn Pierce, Mark Kay, Alain Baumann, Dawn Rotellini, Cesar Garrido, Megan Adediran, Dejan Petrovic, Robed Amin, Declan Noone, Durhane Wong-Rieger, Yuyun Maryuningsih, Margarita Elizabeth Garcia Gonzalez, Assad Haffar, Kibet Shikuku, Barun Khakurel, Donna Coffin, Margareth Ozelo, Novie Amelia Chozie and Tahira Zafar […]
Multidisciplinary track | WFH World Congress 2022
In these sessions from the WFH 2022 World Congress, listen to Kate Khair, Luke Pembroke, Louis Marlow, Andrew Selvaggi, Robert Cooper, Simon Fletcher, Sarah O’Brien, Ming Lim, Brittany Lee-Acton, Carrie Arnold, Rick Waines, Zander Masser, Brian O’Mahony, Barbara Konkle, Adolfo Llinas, Tyler Buckner, Nathalie Roussel, Valérie-Anne Chantrain and Bojan Pirnat address current multidiscilinary topics in […]
von Willebrand Disease | WFH World Congress 2022
In these sessions from the WFH 2022 World Congress, listen to Peter Lenting, Magdy El Ekiaby, Nathan Connell, Brooke Sadler, Giancarlo Castaman, James O’Donnell, Baiba Ziemele, Veronica Flood, Paula James and Helen Campbell address current topics in von Willebrand Disease. The WFH does not engage in the practice of medicine and under no circumstances recommends […]
What is gene therapy?
This patient handbook contains basic information about gene therapy for hemophilia. 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 […]
Clinical trials for hemophilia
This handbook contains basic information about clinical trials for hemophilia. 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, […]
Nurses track | WFH World Congress 2022
In these sessions from the WFH 2022 World Congress, listen to Lori Laudenbach, Cathy Harrison, Sharon Varney, Sandra Dodgson, Jennifer Meldau, Marcela Ganzella, Anjalin D’Souza, Jemma Efford, BJ Ramsay, Sarah Johns, Jan Kuhn, Greta Mulders, Khalid Al Habaybia, Khaled Al Qawasmeh, April Jones, Kim Schafer, Luke Pembroke, Marlene Beijlevelt, Lauren Nyhan, Nathan Connell, Carien Manuels, […]
Psychosocial track | WFH World Congress 2022
Reducing anxiety and stress for people impacted by a bleeding disorder In this session from the WFH 2022 World Congress, Susan Cutter (United States), Patricia Cabré (Spain) and Sarah Whitaker (United Kingdom), will discuss the impact of anxiety and stress on parents and caregivers, couples, young adults, and people with inherited bleeding disorders, as well […]
Data & Demographics workshop | WFH World Congress 2022
In this workshop from the WFH 2022 World Congress, listen to Miguel Escobar, Alfonso Iorio, Donna Coffin, Ellia Tootoonchian, Emily Ayoub, Toong Youttananukorn, Mark Skinner, Mayss Naccache, Thi Mai Nguyen, Jeff Stonebraker, and Declan Noone address improving patient outcomes through data. The WFH does not engage in the practice of medicine and under no circumstances […]