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.

Pierre Robin Network

a/k/a: PRN


3604 Biscayne
Quincy, IL 62305





800 Number




Email Address


The Pierre Robin Network was formed in May of 1999 by the mother of a son with Pierre Robin syndrome, which is characterized by a small lower jaw, displaced tongue, and cleft soft palate. The organization is made up of parents, relatives, caregivers, adults with PRS and professionals who have an interest in PRS. The purpose is to network families and individuals with PRS and provide information to anyone who has an interest. Parents and caregivers do not need to feel alone: having a child with PRS can be overwhelming. There are many issues associated with PRS, which are unique to PRS.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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