World Federation of Hemophilia Fédération Mondiale de l'Hémophilie

The World Federation of Hemophilia (WFH) is composed of National Member Organizations (NMOs) in 152 countries. The mission of the WFH is to improve and sustain care for people with inherited bleeding disorders around the world. Through various communication and educational tools websites publications workshops congresses and twinning activities the WFH improves diagnosis and treatment in developing countries builds the capacity of its NMOs to effectively serve the bleeding disorders community shares knowledge and promotes the quality safety and standards of care. The WFH has developed two unique registries: the World Bleeding Disorders Registry (WBDR) and the Gene Therapy Registry (GTR). The WBDR is a web-based data entry system that provides a platform for a network of hemophilia treatment centres (HTC) to collect uniform and standardized data on people with hemophilia. The Gene Therapy Registry is a global database aiming to collect clinical data on all patients with hemophilia who receive gene therapy globally either through a clinical trial or post-approval. The WFH Humanitarian Aid Program improves access to care and treatment by providing support to national member organizations (NMOs) hemophilia treatment centres (HTCs) and healthcare practitioners (HCPs) in emerging countries. This support comes in the form of education training and donated factor and non-factor replacement therapy. Since the expansion of the Humanitarian Aid Program in 2016 the WFH has become the largest distributor of donated treatment products in the world. The WFH supports and empowers patient leaders and healthcare professionals worldwide by providing national regional and global training programs and initiatives and plays a leadership role in global advocacy by convening the global bleeding disorders community to promote equitable access to care and to current and emerging treatments. The WFH contributes to setting standards of care globally by monitoring and communicating treatment-related safety and supply issues by convening international multi-stakeholder meetings to address challenges in access to safe and effective therapy and by providing up-to-date and accurate treatment-related information to our community. In the course of its operations the WFH depends on the work of volunteers to carry out a great portion of its different programs and activities.