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.

Wolf Hirschhorn Syndrome Trust for the UK and Ireland

a/k/a: WHST


1 Hawthorne Villas
Holmes Chapel
Crewe, CW4 7AR
United Kingdom



800 Number


Email Address


The Wolf Hirschhorn Syndrome Trust for the UK and Ireland (WHST) is a non-profit, self-help organization in the United Kingdom dedicated to gathering and disseminating information about Wolf-Hirschhorn syndrome and enabling parents of affected children to exchange information, support, and resources through its parent networking program. Wolf-Hirschhorn syndrome, a rare chromosomal disorder caused by a partial deletion of the short arm (p) of chromosome 4, is characterized by widely set eyes, an abnormally small head, cleft palate, low-set ears, undescended testicles in affected males, and/or mental and/or psychomotor retardation. Established in 1986, the group coordinates fund-raising activities; acts as a contact point for physicians and other healthcare professionals who are conducting research into the disorder; and provides information on the disorder to affected families, healthcare professionals, and other interested individuals. The group provides a variety of educational and support materials through its database, directory, regular newsletter, reports, and brochures.

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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.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