A Public Health Framework for Rare Blood Disorders

Abstract

f S The public health system encompasses governments, healthcare providers, and others working to improve population health. The IOM in 1988 dentified three core functions of public health: assessent, policy development, and assurance. In 1994, the Core Public Health Functions Steering Committee, which included representatives from U.S. Public Health Service agencies and other major public health organizations, developed the framework for the ten essential services for public health. This framework of generic goals nd strategies is used by public health programs and ystems to address health challenges facing the populaion or community as a whole, notably environmental azards, injuries, infections, and common chronic disases, but has also been applied to blood disorders. The papers in this supplement to theAmerican Journal of PreventiveMedicine address various facets of blood isorders and public health. Specifically, the majority of he papers focus on blood disorders that are considered are in North America or Western Europe. Because of heir rarity, rare disorders often are not considered to fall nder the purview of the public health system even hough, collectively, rare disorders do affect large numers of people. However, a public health framework is eeded to address public health services and functions for ll rare disorders, including blood disorders, regardless of he incidence or prevalence of a given disorder. The lack of a public health framework for many blood isorders, both rare and common, is a particular concern. or example, even a relatively common blood disorder uch as venous thromboembolism (VTE), with a U.S. revalence of at least 1 million people, lacks an established mechanism for surveillance. Little is definitively known about the magnitude of the public health burden of VTE. AlthoughVTE is an important cause ofmortality