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P.O. Box 1092
West Seneca, NY 14224 USA
The Diamond Blackfan Anemia Registry DBAR) associated with the Department of Pediatric Hematology/Oncology at Schneider Children's Hospital, Albert Einstein College of Medicine, is a research organization dedicated to acquiring, analyzing, and disseminating information on Diamond Blackfan anemia to affected individuals, their families, and medical professionals. Diamond Blackfan anemia (DBA), or pure red cell aplasia, is a rare genetic disorder characterized by moderate to severe deficiency of red blood cells. Blood cell abnormalities may be accompanied by an unusual physical appearance, paleness, weakness, and lethargy. The registry was established in 1993 to help increase understanding of the cause(s) of this disease, leading to possible treatment and, ultimately, a cure for DBA. Affected individuals and/or their families enroll in the registry by completing a registration form. This is followed by a detailed questionnaire, which is completed by the affected individual, his or her family, and physician(s). The registry serves as a conduit through which affected families correspond and network for the purposes of mutual support and education. If the family so chooses, their name is released to the family support group and they are placed on the mailing list for DBA newsletters and other communications.
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