Advocacy During COVID-19: Voices from Europe
Listen to this 1-hour webinar that took place on 27 November 2020, chaired by Baiba Zimele (WFH lay member). Presenters Ellia Tootoonchian (WFH) and Donna Coffin (WFH) discuss the latest data of the Annual Global Survey including patient demographics, while Brian O’Mahony (Ireland), Dejan Petrovic (Serbia) and Dr. James Gauci (Malta) provide information on advocacy […]
Virtual workshop: Creators and innovators: NMOs investing in youth
Listen to this 75-minute workshop that took place on 26th November 2020, moderated by Clive Smith (UK), WFH lay member, to explore youth engagement practices around the world, and to help participants understand the benefits of active youth involvement in national member organizations (NMO). This session features a debate contest involving Deniece Chevannes (USA), new […]
WFH Development Grant Program Webinar
This 1-hour webinar on the WFH Development Grant Program is presented by Dawn Rotellini (Chair, Development Grants Selection Committee) and Salome Mekhuzla (WFH Director, Global Development). The Development Grant Program aims to encourage new and innovative projects to support the inherited bleeding disorders community worldwide. This webinar provides WFH NMOs with an overview of the […]
Advocacy During Covid-19: Having our Voices Heard
This 90-minute webinar on advocacy for National Member Organizations (NMOs) took place on October 27th, 2020. Dr. Alexsandro dos Santos Machado (Brazil), Dr. Munira Borhany (Pakistan) and James Kago (Kenya) discussed the advocacy challenges and activities of their NMOs during the COVID-19 pandemic. WFH Board Member Dawn Rotellini (USA) moderated the session and provided different advocacy […]
Youth Resilience During COVID-19 – Staying Strong Together!
Listen to this 1-hour webinar that took place on 3 September 2020 to learn stories of youth engagement around the world and wellness tips from a psychosocial expert. The panel of youth speakers included Salomón Cárcamo Bonilla (Honduras), Jessica Page (U.K.) and Jodarsen P. Arnachellum (Mauritius). Edward Kuebler (U.S.A), outgoing WFH Psychosocial Committee chair, provided […]
What is… Health Economics and Health Economic Evaluation
In the Wednesday morning session entitled Can’t or Won’t Pay: Health Economics and Bleeding Disorders, Jamie O’Hara describes the many variables and types of analyses that go into health economics assessments.
Health Technology Assessment: Introduction, American perspective, and European perspective
In the Tuesday afternon session on Health Technology Assessments (HTA), Mark Skinner introduces the topic and then Cliff Goodman and Chris Henshall alternate to present the American and European perspectives, respectively.
Planning and Initiating Projects: A Guide for Emergent NMOs
Volunteer team members, and their beneficiaries, often have differing opinions on what projects should be of highest priority for an organization. It is essential to reach agreement on your priorities in a relatively quick and efficient manner and to coordinate the team’s energies, in order to be the most effective. This guide provides strategies for […]
Hemophilia Patient Organization Self-Assessment
A self-assessment is a useful exercise for organizations to take a closer look at what they do and how they do it. The process can help identify strengths and weaknesses and guide strategic planning. In 2011, the WFH developed this self-assessment specifically for its national member organizations (NMOs). It features a scoring system to evaluate […]
Expanding Access to Hemophilia Treatment Products
New panel discussion: Expanding Access to Hemophilia Treatment Products, what will be the game changer? While the WFH vision is “Treatment for All,” the majority of the world’s population has little to no access to hemophilia care. Patient advocates and WFH Humanitarian Aid and Public Policy representatives debate what might be the game changer in […]
Young Voices
The strength of the WFH and of its national member organizations lies in the commitment of inspiring leaders who work every day towards advancing the common vision of Treatment for All. However, many patient organizations struggle to engage young adults within their communities and there is a need to inspire more active participation. Young Voices […]
Guide to National Tenders for the Purchase of Clotting Factor Concentrates
This guide explains how a national procurement system of factor concentrates can help to ensure that people with bleeding disorders have access to treatment which is not only sufficient in quantity, but also meets the required standards in relation to safety, efficacy, and quality. The second edition includes diverse case studies, discussion of prolonged half-life […]