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.
FG Syndrome Family Alliance
922 NW Circle Blvd
Suite 160 PMB 290
Corvallis, OR 97330
The FG Syndrome Family Alliance (FGFA) was established in 1997 as a support organization for families of children with FG syndrome, a rare genetic disorder characterized by varying degrees of mental retardation, delayed motor development, abnormally diminished muscle tone (hypotonia), characteristic abnormalities of the head and facial (craniofacial) area, respiratory problems, visual and/or hearing impairment, and/or gastrointestinal, skeletal, heart, and/or other abnormalities. Associated symptoms and findings may vary greatly in range and severity from case to case. Mental retardation is not an obligatory finding in the FG syndrome, and some individuals with the FG syndrome are gifted. Because FG syndrome is inherited as an x-linked recessive trait, it is usually fully expressed in males only. The FG Syndrome Family Alliance currently serves over 200 families around the world. The alliance is dedicated to providing information and support to families of children with FG syndrome; offering networking services including an online mailing list (listserv) and regional coordinators, enabling parents to exchange mutual support, information, and resources; and assisting researchers in the development of an international registry for FG syndrome. The alliance assists researchers by helping them access candidates for studies, including recent studies on gene mapping and behavioral phenotype. It is currently working with its medical advisors to create standards of care document for pediatricians caring for patients with the FG syndrome. The organization hosts an international medical and family conference every three years.
The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and that credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions are strictly prohibited.
NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.