Cooley's Anemia: A Psychosocial Directory.

The directory is intended to aid patients and their families who are coping with the genetic disorder of Cooley's anemia. A brief review of the disease covers background, genetics, symptoms, effect on the patient, treatment, and current research. The next section looks at psychosocial needs at various times (time of diagnosis, infancy and toddler years, preschool years, school years, adolescence, and young adulthood). The next section describes resources in the following areas: medical care and management, genetic services, self-help and advocacy groups, education, employment, financial assistance, medical assistance, transportation, civil rights/legal assistance, tax benefits, and housing. Over half the document consists of appendixes including listings of: state genetic service coordinators, selected self-help and advocacy groups, state directors of maternal and child health and crippled children's services, state protection and advocacy programs. Also included are a selected reading list of 14 items and a glossary of 15 related terms. (DB)