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.

National Registry for Ichthyosis and Related Disorders


University of Washington
Dermatology Dept. Box 356524
Seattle, WA 98195-6524

800 Number




Email Address


The National Registry for Ichthyosis and Related Disorders is to identify individuals and families in the United States with the ichthyoses and related disorders and to encourage them to participate in the registry. The ichthyoses are a group of rare, inherited disorders characterized by abnormally dry, scaly, thickened skin due to abnormalities in the production of the protein keratin. The goal of the registry is to obtain data for study by skin biologists, pharmacologists, and other scientists in order to promote research into the diagnosis and treatment of these disorders. Interested individuals will be asked to complete a "Patient Enrollment Form"; their physicians will need to complete the "Physician's Form." The National Institutes of Health, American Academy of Dermatology, The Society of Investigative Dermatology, and the Foundation support the registry for Ichthyosis and Related Skin Types (FIRST). Individuals with ichthyosis vulgaris are not included in this registry.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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