(January 28, 2000) - This study’s goal is to outline the clinical spectrum of Netherton Syndrome, Ichthyosis Linearis Circumflexa and Peeling Skin Syndrome, and to elucidate their molecular basis. The study is looking for participants that are single cases as well as families with multiple affected persons for clinical examination and genetic studies. The studies are conducted on a collaborative basis between the Thomas Jefferson University, The National Institutes of Health, and Brown University/Rhode Island Hospital.

Patients diagnosed with these disorders, who are interested to learn more about, or participating in these studies, please contact Dr. Gabriele Richard, M.D., Department of Dermatology and Cutaneous Biology, Thomas Jefferson University, 233 S. 10th Street, BLSB, Suite 409, Philadelphia, PA 19107 (Tel: 215-503-8259, Fax: 215-503-5788, e-mail: [email protected])

National Registry for Ichthyosis & Related Disorders F.I.R.S.T. supports the goals and ideals that the National Registry is trying to accomplish. The National Registry for Ichthyosis and Related Disorders is sponsored by the National Institutes of Health (through its National Insitute of Arthritis, Musculoskeletal and Skin Disease -or NIAMS) and is located at the University of Washington in Seattle. The goal of the Registry is to develop a clinical database of individuals affected with ichthyosis and other rare skin diseases. The Registry’s purpose is to create a list of affected individuals for the purpose of stimulating research about these diseases. This should have a profound impact on research of the ichthyoses and related diseases, since the greatest obstacle facing researchers doing studies on rare diseases is locating affected individuals willing to help them out. F.I.R.S.T. promotes the National Registry to its members and encourages affected individuals to join. You can contact the Registry Director, Geoff Hamill, R.N. at 800-595-1265 or through their webpage http://depts.washington.edu/ichreg/ichthyosis.registry/