Medical plenary: Diagnosis | Virtual Summit 2020
In this plenary from the WFH 2020 Virtual Summit, Steve Kitchen, Alok Srivastava and Pierre Toulon discuss the combination of high BAT score followed by NGS-based genetic diagnosis could be the new paradigm for the primary diagnosis of inherited bleeding disorders. The WFH does not engage in the practice of medicine and under no circumstances […]
Free papers: Data collection and patient outcomes | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Mayss Naccache, Emily Ayoub, Toong Youttananukorn and Ellia Tootoonchian discuss: “The World Federation of Hemophilia World Bleeding Disorders Registry – 2 years update” “Data is the new currency: The World Bleeding Disorders Registry Data Quality Accreditation Program” “Report on the Annual Global Survey – 20 years […]
New technologies, psychosocial aspects and interdisciplinary dental care | Virtual Summit 2020
The Dental Committee is proud to present the dental track at the WFH Virtual Summit with a truly global representation of presenters, speaking on a broad range of topics related to the oral health of individuals with inherited bleeding disorders. The speakers for this session from the WFH 2020 Virtual Summit are Lochana Nanayakkara, Rebecca […]
Dental management and treatment | Virtual Summit 2020
The Dental Committee is proud to present the dental track at the WFH Virtual Summit with a truly global representation of presenters, speaking on a broad range of topics related to the oral health of individuals with inherited bleeding disorders. The speakers of this session are Lochana Nanayakkara, Norjehan Yahaya, Miryam Parreira, Daniel Sundaresan and […]
Connecting the global community through partnerships: WFH Twinning program | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Deniece Chevannes, Jayson Stoffman, Niamh O’Connell, John Sarmenta and Luisa Durante discuss the WFH twinning program. The Twinning Program creates short-term collaborative partnerships between medical professionals as well as patient and youth leaders in developing and developed countries for a period of two to four years. […]
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). […]
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 […]
Improving Care for People with VWD | May 18 2021
Listen to this 90-minute webinar presented on May 18, 2021 to learn about the recently published ASH ISTH NHF WFH 2021 Guidelines on the Diagnosis and Management of von Willebrand Disease (VWD). The session was moderated by Nathan Connell (Assistant Professor of Medicine, Harvard Medical School). Michelle Lavin (WFH VWD & RBD Committee Chair), Baiba […]
Advocacy during COVID-19: what can we do in Africa? – Portuguese
The COVID-19 pandemic has significantly affected the bleeding disorders community, and many countries have seen their governments shift their focus and resources to combating the pandemic. It is important for NMOs to remain aware of the changes in government priorities and take a proactive approach to ensure that the needs of the local bleeding disorders […]
Advocacy during COVID-19: what can we do in Africa?
The COVID-19 pandemic has significantly affected the bleeding disorders community, and many countries have seen their governments shift their focus and resources to combating the pandemic. It is important for NMOs to remain aware of the changes in government priorities and take a proactive approach to ensure that the needs of the local bleeding disorders […]