You are here: Home / Rare Disease Information / Patient Organizations Database

Search Patient Organizations

Enter organization name or disease name to search for organizations that help people with rare diseases.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z


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.

CDG Family Network

a/k/a: CDGFN


PO Box 860847
Plano, TX 75074



800 Number




Email Address


The CDG Family Network is a non-profit organization founded by parents seeking information and support for those affected by a group of disorders known as congenital disorders of glycosylation (CDG). Members of the network exchange information with families and physicians, locate new families, and raise awareness among the medical community. The CDG disorders are a group of newly discovered metabolic diseases that cause abnormal tissue and organ development affecting the entire body, especially the function of the central nervous system and the peripheral nervous system.

0-9 - A - B - C - D - E - F - G - H - I - J - K - L - M - N - O - P - Q - R - S - T - U - V - W - X - Y - Z

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.

Copyright ©2015 NORD - National Organization for Rare Disorders, Inc. All rights reserved.
The following trademarks/registered service marks are owned by NORD: NORD, National Organization for Rare Disorders, the NORD logo, RareConnect. .