The Changing Organization (or Roles) of the World Federation of Hemophilia

Abstract

This paper discusses the changing roles of the World Federation of Hemophilia (W.F.H.).Since its inception, the W.F.H. has played a major leadership role in providing a forum for the exchange of scientific and medical information. Credit needs to be given to this forum for advances in medical treatment. However, it has been shown that effective comprehensive care for the hemophiliac requires the participation of not only the health care team, but also the support of lay members and agencies in the community which include the W.F.H. and National Societies.This was recognized in the formation of Task Forces by the W.F.H. Task Forces I and II represent the delivery of care, and the manufacture and use of concentrates. They can be considered as of most concern to the medical professionals. Task Force III represents the concerns of the hemophiliac and those supporting hemophiliacs.Task Force III represents a new emphasis for the W.F.H. in congresses and organization.This change could be labelled as, “A strategy to move towards a parity between lay and medical groups within the W.F.H.”One can view the medical programs of the W.F.H. including congresses, I.H.T.C. (Int. Hemophilia Training Centers), regional seminars and sessions, etc., as having parallel programs for the lay members. Administrative manuals, poster descriptions, maps, the Guide for the Travelling Hemophiliac for training, information systems, etc., are examples of programs which illustrate the importance of this new role for the W.F.H.Special programs need to be designed for the “isolated” hemophiliac. An isolated hemophiliac has been defined as one who is not getting appropriate care for any of the reasons of location, economics, health care, etc., and is at risk. Such a person could also be defined as “disadvantaged”.