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 […]
Communicating impact: tips on effective reporting | October 29 2021
Listen to this 90-minute webinar presented on October 29, 2021 on Communicating impact: tips on effective reporting. This webinar offers participants recommendations and tips for communicating the impact and achievements of their projects in a meaningful way, as well as producing effective programmatic reports, financial tracking and budgeting. Using the framework of the Development Grant […]
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. […]
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 […]
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 […]
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 […]
Glenn Pierce and Steve Pipe discuss the latest updates on Gene Therapy for hemophilia | July 2021
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, the WFH urges patients to check dosages with a physician […]