goldenhar Family Support Group

The Goldenhar Family Support Group is a voluntary organization in the United Kingdom dedicated to supporting families of children with Goldenhar syndrome, a rare disorder that is apparent at birth (congenital). Goldenhar syndrome, a term that is often used synonymously with “Oculo-Auriculo-Vertebral (OAV) Spectrum,” is characterized by symptoms and physical features that may vary greatly in range and severity from case to case. Such abnormalities tend to involve the cheekbones, jaws, mouth, ears, eyes, and/or bones of the spinal column (vertebrae). Although, in most cases, such abnormalities affect one side of the body (unilateral), some affected individuals have such differences on both sides of the body (bilateral), with one side typically more affected than the other (asymmetry). In most cases, Goldenhar Syndrome (OAV Spectrum) appears to occur randomly, for no apparent reason (sporadic). However, in some cases, positive family histories have been present that has suggested autosomal dominant or recessive inheritance. In addition, some researchers suggest that the disorder may be caused by the interaction of many genes, possibly in combination with environmental factors (multifactorial inheritance). The Goldenhar Family Support Group was established in 1989 and currently has approximately 40 members. The Group provides networking opportunities, enabling affected families to meet and/or to communicate with one another by phone or mail. In addition, the Goldenhar Family Support Group provides educational and support materials including a fact sheet and a regular newsletter.