Wolf Hirschhorn Syndrome Trust for the UK and Ireland

About 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.

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