WFH Information Clearinghouse

K.Schimpf, Rehabilitation Hospital and Haemophilia Center, Heidelberg Rehabilitation Foundation, PO Box 101 409, D-6900 Heidelberg (FRG) One of the principle aims set by the World Federation of Hemophilia for the eighties is to apply in any region of the world the considerable advances made in recent times. A good step in the right direction would be to disseminate information on the real possibilities offered by specialized treatment and care in haemophilia. A general interest for information exists not only in the area directly concerned with the treatment of coagulation factor deficiencies but also in the psychosocial and other such problems related to physical handicaps caused by haemophilia. These problem areas may be roughly divided into the following. (1) non-medical therapeutic services (such as physical therapy, occupational therapy, social guidance); (2) social and psychological concerns (family, recreation, play, sport); (3) school and work. If one speaks with haemophiliacs or their parents, then one realizes how incredibly interested they are in all types of information to do with novel developments and new possibilities of improving their situation. The following are most often mentioned: (1) remobilization after bleeding and follow-up care; (2) other patients’ experiences with this disease; (3) statutory regulations which promise them help. The boards of management of haemophilia societies are interested above all in the following: (1) Which objectives National Haemophilia Societies have achieved that they havenot yet achieved themselves? (2) How were these things achieved?Most often required general information other than the supply of blood and plasma derivatives is accorded to areas such as (a) the range of payments of medical insurance agencies and the utilization of this range payments; (b) providing haemophiliacs who are unable to work with medical and social insurance; (c) the statutory regulations and assistance for handicapped persons, including tax concessions; (d) the possibility of financial assistance to pay for telephone, refrigerator, driving licence; etc.; (e) public relations. In some countries and regions it has not been possible to obtain official approval for some of the more important requests from haemophiliacs. In cases such as these, the 98 Schimpf