International Costello Syndrome Support Group

The International Costello Syndrome Support Group is a voluntary, non-profit organization dedicated to providing support and information to individuals and families affected by Costello Syndrome. Costello Syndrome is a rare disorder characterized by growth delay after birth (postnatal), leading to short stature; excessive, redundant loose skin on the neck, palms of the hands, fingers, and soles of the feet; development of benign (non-cancerous) growths (papillomata) around the mouth (perioral) and nostrils (nares); mild mental retardation; and/or characteristic facial appearance. Established in 1996, the group publishes a newsletter approximately every four months. It serves as a source of information for affected families as well as a forum for information exchange and the sharing of personal stories.