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.

Romberg's Connection


2418 Cedar Heights Drive
Cedar Falls, IA 50613





800 Number




Email Address


The Romberg's Connection is an online support group dedicated to locating individuals and families whose lives are affected by Parry-Romberg syndrome and offering appropriate support. This is accomplished primarily through the mutual exchange of e-mail and regular mail correspondence, online networking through the Romberg's Connection web site, and phone contacts. Parry-Romberg syndrome is a rare disorder characterized by slowly progressive wasting (atrophy) of the soft tissues of half of the face (hemifacial atrophy). Symptoms can include distinctive changes of the eyes and hair; and sometimes neurological abnormalities including episodes of uncontrolled electrical disturbances in the brain (seizures) and episodes of severe pain in tissues supplied by the fifth cranial nerve (trigeminal nerve) including the mouth, cheek, nose, and/or other facial tissues (trigeminal neuralgia). Established in 1997, the Romberg's Connection has a membership of 500 members, worldwide. Many of the members have met in various locations throughout the world.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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