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.

Hallerman-Streiff Syndrome Resource

a/k/a: HSSG


3524 Blenheim Road
Phoenix, MD 21131



Email Address


The Hallermann-Streiff Syndrome Resource is a non-profit, voluntary organization whose goal is to connect families who have Hallermann-Streiff syndrome, a rare genetic syndrome that is primarily characterized by distinctive malformations of the skull and facial region, degenerative skin changes, and short stature. Many affected individuals also have abnormalities of the eyes or the lenses of the eyes. The group offers support, friendship and information to affected individuals and families. It also seeks to raise awareness among medical professionals and the general public.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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