meetings of small working groups, and development of workable models. The weekly CCBC newsletter is a comprehensive chronicle of information about current government activities affecting blood centers as well as new developments in blood services and health care in general.

American Blood Resources Association

The American Blood Resources Association (ABRA) is a trade association founded in 1971 to represent the plasma collection and fractionation industry in both federal and state government relations. The ABRA's role is to educate the public at large about the commercial plasma and plasma products industry. The ABRA's mission is to promote and encourage research, to foster and monitor the promulgation of reasonable and just regulations, and to institute beneficial projects on behalf of the commercial plasma and plasma products industry. The ABRA provides facility and personnel certifications and develops industry manufacturing standards and guidelines. Its members operate under a strict code of ethics to ensure the high standards and quality. Its memberships operate over 80 percent of the U.S. commercial plasma collection facilities, and includes all of the commercial plasma product manufacturers in the United States and a majority of the manufacturers worldwide. Members manufacture and collect plasma in 42 states across the country.

HEMOPHILIA ORGANIZATIONS

The Nature of Hemophilia

Hemophilia is a rare, inherited, sex-linked disorder characterized by a deficiency in blood-clotting proteins. The estimated number of people with hemophilia in the U.S. population is approximately 15,000-16,000 (CDC, HRSA, MCHB, 1991, 1992, 1993). Hemophilia has been characterized by high mortality and a significantly lower mean age of death as compared to the general population (Chorba, et al. 1994).

There are two major types of hemophilia. The more common, hemophilia A, is characterized by a deficiency of antihemophilic Factor VIII clotting protein. The much less frequently occurring variety of hemophilia is hemophilia B, characterized by a deficiency of Factor IX clotting protein. About 85 percent of hemophilia cases are due to Factor VIII deficiency, about 14 percent to deficiencies of Factor IX. The remaining 1 percent involve the much more rare congenital clotting factors: V, VII, X, or XI (Hoffman, et al. 1994). The clinical severity of hemophilia is related to the degree to which the relevant factor is absent or deficient. The distinction of disease severity (i.e., mild,



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