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.

Foundation for Nager and Miller Syndromes

a/k/a: FNMS


13210 SE 342nd Street
Auburn, WA 98092



800 Number




Email Address


The Foundation for Nager and Miller syndromes is an international, non-profit organization that functions as a support group for people affected by two similar genetic conditions (Nager and Miller syndromes) involving severe facial and limb abnormalities. The foundation serves as an information clearinghouse that links other similarly challenged families. An extensive library of resources and medical reports is available to those with Nager and Miller syndromes and their physicians. The organization has initiated and is involved in a genetic research project that is working to locate the genes responsible for these disorders. This study is being conducted at the University of Maryland in Baltimore and John Hopkins. The foundation also provides scholarships to children between the ages of 8 and 18 years who wish to attend a summer camp program in Indiana called About Face. This camp allows children to experience independence and to meet others with similar problems. The foundation publishes a biannual newsletter entitled "All About Me." Articles from this newsletter are regularly reprinted in various other publications. Interpreters are available for written correspondence in German, Portuguese, French, Italian, Spanish, and Polish.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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