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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Opitz G/BBB Family Network, Inc.

a/k/a: Opitz G/BB/FN


P.O. Box 516
Grand Lake, CO 80447





800 Number




Email Address


The Opitz G/BBB Family Network is a voluntary, non-profit, self-help organization dedicated to providing support to individuals and family members affected by Opitz G/BBB syndrome. Opitz G/BBB syndrome is a rare hereditary disorder characterized by widely set eyes, hernias, undescended testicles and abnormal placement of the urinary opening on the underside of the penis in males, partial or total absence of the thick band of nerve fibers that connects the left and right hemispheres of the brain (hypoplasia or agenesis of the corpus callosum), swallowing difficulties, and/or additional abnormalities. Established in 1994, the Opitz G/BBB Family Network provides phone support; promotes the sharing of information, resources, and support among affected families; engages in patient advocacy; and offers appropriate referrals. It also maintains a database of members, engages in professional education, and offers a variety of educational and support materials including a regular newsletter and brochures.

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