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National Organization for Rare Disorders (NORD) P.O. Box 1968 (55 Kenosia Avenue) Danbury, CT   06813-1968 orphan@rarediseases.org http://www.rarediseases.org Tel: 203-744-0100 Voice Mail 800-999-NORD (6673) Fax: 203-798-2291

National Heart, Lung, and Blood Institute (NHBLI) National Institutes of Health, DHHS 31 Center Drive, Rm. 4A21 MSC 2480 Bethesda, MD   20892-2480 http://www.nhlbi.nih.gov Tel: 301-592-8573/240-629-3255 (TTY) Recorded Info: 800-575-WELL (-9355)