Wolf Hirschhorn Syndrome Trust for the UK and Ireland

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.