Critical need for harmonized post marketing surveillance in gene therapy | Virtual Summit 2020
With regulatory approval of the first gene therapy product expected, there is an urgent need for a mechanism to collect long-term data on safety and variability and durability of efficacy. There will be elements required by regulators for post marketing surveillance and additional data needed to enhance our understanding of gene therapy outcomes and their […]
Better data, better patient outcomes: 20 years of data collection | Virtual Summit 2020
This workshop from the WFH 2020 Virtual Summit, presented by Ellia Tootoonchian, Mark Skinner, Donna Coffin, Alfonso Iorio, Emna Gouider-Belhadjali and Jeff Stonebraker, is intended for healthcare professionals engaged in clinical research and patient leaders and organizations who have an active interest in using health data in their work. The WFH does not engage in […]
Delivering comprehensive care: practical considerations | October 21 2021
Listen to this 90-minute webinar, Delivering comprehensive care: practical considerations, presented on October 21, 2021. This is the second of three webinars in the PACT Comprehensive Care Series, designed to support healthcare providers in setting up and strengthening comprehensive care in their centres. The session was moderated by Dr. Miguel Escobar (WFH Board of Directors). […]
Practical Education on Bleeding Disorders: Knowledge for All | WFH webinar series | October 12 2021
Listen to this 2-hour webinar presented on October 12, 2021 to learn about global topics related to bleeding disorders, with a focus on comorbidities associated with hemophilia. The session was moderated by Glenn Pierce (WFH Vice President, Medical). Gianluigi Pasta (WFH MSK Committee chair), Paul McLaughlin (Specialist Physiotherapist), Adolfo Llinas (Medical director), Robert Klamroth (Department […]
Setting up comprehensive care: key principles, services, and roles | September 29, 2021
Listen to this 90-minute webinar, Setting up comprehensive care: key principles, services, and roles, presented on September 29, 2021, the first of 3 webinars in the PACT Comprehensive Care Series, designed to support healthcare providers in setting up and strengthening comprehensive care in their centres. The session was moderated by Dr. Alok Srivastava (Professor in […]
Gene therapy: the unfolding story | Virtual Summit 2020
We are still learning about gene therapy. Each patient experience is different, and gene therapy is not for everyone – either by choice or by exclusion because of the antibodies. In this session from the WFH 2020 Virtual Summit, Debra Pollard, John Pasi, David Page, Garrett Hayes, Rob Schroeder and Enrique Preza Hernandez discuss: What […]
Hemophilia in Pictures – Indonesian
Also Available In: English, Spanish, French, Arabic, Russian, Simplified Chinese TThis is not an official WFH translation. This resource has been translated with permission by a WFH National Member Organization (NMO), and is shared here with their kind permission. Translating organizations are encouraged to have translations reviewed by local experts, the WFH is not responsible for […]
WFH Treatment Guidelines: Practical Application in the Middle East | July 30, 2021
Listen to this 90-minute webinar presented on July 30, 2021, on the WFH Guidelines for the Management of Hemophilia, 3rd edition and their practical application in the Middle East. The session was moderated by Alok Srivastava (Professor in the Department of Haematology, and Head of the Centre for Stem Cell Research at the Christian Medical […]
Key Concepts and Principles of Care for Bleeding Disorders | July 28, 2021
Listen to this back-to-basics 90-minute webinar, presented on July 28, 2021, which offers members of NMOs the opportunity to get a refresher on the key concepts and principles of care for inherited bleeding disorders. The webinar program also covers foundational knowledge on topics relevant for NMO members and advocates. This webinar was chaired by Carlos […]
Proceedings of the WFH’s Eleventh Global Forum on Research and Treatment Products for Bleeding Disorders
A summary of discussions held at the Eleventh WFH Global Forum on Research and Treatment Products for Bleeding Disorders which brings together patient groups, healthcare providers, researchers, regulators, industry representatives, and not-for-profit fractionators.
WBDR 2020 Data Report
The World Bleeding Disorders Registry (WBDR) 2020 Data Report provides aggregate data on more than 7,000 people with hemophilia around the globe who are enrolled in the WBDR.
Frequently Asked Questions on Women and Girls with Bleeding Disorders
This resource has also been translated into the following languages, with permission from the WFH, by NMOs/Other Organizations: German Many women and girls also experience symptoms of Hemophilia. Some women live with their symptoms for years without being diagnosed or even suspecting they have a bleeding disorder. This fact sheet includes answers to questions such […]