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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.

11q Research and Resource Group

a/k/a: 11q R+R


5155 Shotwell Street
Woodstock, GA 30188



800 Number




Email Address


The 11q Research and Resource Group is a non-profit organization dedicated to providing information, assistance, and support to parents, other family members, and healthcare professionals caring for children with structural abnormalities of chromosome 11, particularly abnormalities of 11q (the "long arm" of chromosome 11). The group primarily provides information and support concerning Jacobsen syndrome, a rare chromosomal disorder also known as "partial deletion" or "partial monosomy" of chromosome 11q. This rare chromosomal disorder may be characterized by a variety of symptoms and physical features including abnormally slow growth before and after birth, delayed psychomotor development, mental retardation, distinctive malformations of the head and facial area, abnormalities of the eyes, malformations of the hands and/or feet, defects of the heart, and/or other physical abnormalities. Established in 1996 and consisting of about 150 members, the 11q Research and Resource Group engages in patient advocacy, promotes research, and offers a variety of services including networking opportunities.

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