Emerging from COVID – Defining a new normal | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Declan Noone, Len Valentino, Kate Khair and Ed Kuebler discuss: “What can our patients expect in a ‘new normal’ “ “The changing environment in HTC’s and hospitals” “PTSD, other challenges, and help getting to the ‘new normal’” “Patient concerns and positive outcomes” The WFH does not […]
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 […]
Free papers: VWD and Women’s issues | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Andra James, Mandy Yap, Mario von Depka Prondzinski, Lubna Zafar, Robert Sidonio and Roseline d’Oiron discuss: “The clinical usefulness of elongated platelet function analysis in characterizing Bleeding of Unknown Cause (BUC)” “Angiogenic alterations in VWD as a possible cause of epistaxis” “The menace of menorrhagia in […]
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 […]
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 […]
Medical Plenary: Gene Therapy | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Steve Pipe and Luigi Naldini explore the promise of gene therapy and the broad-based multi-stakeholder preparation that is needed to deliver on this achievement. Steve Pipe explores that, although we currently stand on the threshold of this achievement, delivering on this promise will require broad-based multi-stakeholder […]
Women and girls with hemophilia | Virtual Summit 2020
In this session from the WFH 2020 Virtual Summit, Roseline d’Oiron, Sarah O’Brien and Andra James discuss issues on women and girls with hemophilia (WGWH), including female carriers with low levels of FVIII or FIX and/or bleeding experiences. The key points that will be covered are the importance of early diagnosis during childhood of affected […]