Abstract

Regional sickle cell organizations are needed to assemble, catalogue, and distribute information, to maintain teaching programs, to serve as referral agencies, and to aid individuals with sickle cell hemoglobinopathies in obtaining maximal benefit from existing community services. The governing body should be representative of the entire area. More than half of the voting members should be adults with the sickle cell trait or sickle cell disease and/or their relatives. A suggested minimal staff could consist of a secretary-librarian and a director. The usefulness of the “Center” to patients, especially at the time of their recurrent painful episodes, could be greatly extended by the maintenance of a 24-hour telephone answering service. Funding of the “Regional Sickle Cell Information Center” by the United Way is recommended.