Procurement models | Global Policy and Access Summit 2021
In this session from the Global Policy and Access Summit, Mukesh Garodia, Brian O’Mahony, Yuri Zhulyov, Margarita Elizabeth Garcia Gonzalez and Brian Fitzgerald give an overview of various procurement models for hemophilia and other inherited bleeding disorders therapeutic products, present key principles in setting up an efficient national procurement mechanism and highlight the importance of […]
WFH Gene Therapy Registry – User guide for people with hemophilia
This document is an introductory guide for people with hemophilia who wish to join the World Federation of Hemophilia (WFH) Gene Therapy Registry (GTR). It answers basic questions about the registry, its purpose, and what participants can expect. Please reach out to WFH with questions regarding participation in the registry at [email protected]. WFH Gene Therapy […]
WFH Gene Therapy Registry – User guide for hemophilia treatment centres
The World Federation of Hemophilia (WFH) Gene Therapy Registry (GTR) welcomes the participation of all Hemophilia Treatment Centres (HTCs) involved in gene therapy. This includes HTCs that administer gene therapy and those that manage or follow-up with patients who have received gene therapy at other centres. This user guide will orient HTCs to the WFH […]
WFH Gene Therapy Registry – Basics of hemophilia, gene therapy, and long-term data collection
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 […]
Gene therapy for hemophilia clinical trials pipeline tool
Follow the progress of hemophilia gene therapy clinicals with the WFH Gene Therapy for Hemophilia Pipeline tool to track clinical trials and stay informed about current research. For more information about clinical trials, click here. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. […]
What are Inhibitors?
The previous edition of this resource is also available in: Japanese This patient handbook contains basic information about inhibitors, the most serious complication of hemophilia.
International Women’s Day webinar | March 8 2022
Listen to this 90-minute webinar presented on March 8, 2022, to learn about women and girls with bleeding disorders. The webinar is a joint collaboration between the WFH Women and Girls with Bleeding Disorders (WGBD) committee and the WFH von Willebrand Disease (VWD) and Rare Bleeding Disorders (RBD) committee. Speakers will include Dawn Rotellini (U.S.A), […]
WFH Humanitarian Aid program: Past and future | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Assad Haffar, Megan Adediran, Kibet Shikuku, Glenn Pierce, Alain Baumann, Bill Sibold, Guido Oelkers, Iqbal Mufti, Klaus Marten, Lauren Syring & Antti Kourula discuss the WFH Humanitarian Aid Program, which improves access to care and treatment by providing much-needed support for people with inherited bleeding disorders […]
What does quality of life mean to you? Living with (an inherited) bleeding disorder in a changing world | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Deon York, Nathalie Roussel, Cathy Harrison, Lauren Phillips & Randall Curtis discuss what quality of life means from the perspective of a person living with a bleeding disorder. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for […]
Multidisciplinary plenary: Women ageing gracefully | Virtual Summit 2020
In this plenary from the WFH 2020 Virtual Summit, Kate Khair, Michelle Lavin, Rezan Abdul-Kadir & Jameela Sathar will address women’s long-term health issues and improve screening, as well as answer any questions from the virtual audience. This plenary has a special emphasis on women and those who care for them, and aims to identify […]
WFH Educational: Treatment choice in an era of change | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Glenn Pierce, Johnny Mahlangu, David Page & Brian O’Mahony explore the patient and provider perceptions on treatment choices: how does each make a choice and process the risk-benefit analysis. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment […]
Treatments for bleeding disorders: Current environment & pipeline products | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Radoslaw Kaczmarek, Flora Peyvandi, Dan Hart & Johnny Mahlangu discuss novel products newly arrived on the market, that are very different from traditional clotting factor concentrates and pose new questions about safety and clinical use. The WFH does not engage in the practice of medicine and […]