A support group that helps parents with children with Wolf Hirschhorn Syndrome (WHS) by putting them in touch with each other. Also Liaise with doctors and professionals doing research into this condition. A national meeting is held once every two years and a newsletter is sent to members quarterly.
The group offers advice, support and friendship to anyone with an interest in Wolf Hirschhorn Syndrome and website with message board. The diagnosis of Wolf syndrome is made when blood has been taken from a newborn baby to try to discover why he or she has a number of unusual physical features. If a baby is found to be lighter than expected or to have a shape of face very different from the parents, a close examination may show a number of other variations. There may be unusually shaped ears, hands or genitalia and there may be evidence of defects in the heart or palate.