National Institute of Neuological Disorders and Stroke (NINDS): one of the more than two dozen research institutes and centers that comprise the National Institutes of Health (NIH). NINDS conducts and supports research on brain and nervous system disorders.

National Organisation for Rare Diseases (NORD): a federation of voluntary health organisations dedicated to helping people with rare diseases and assisting the organisations that serve them.

Madisons Foundation: dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication amongst parents, physicians and medical experts.

http://www.icongrouponline.com/health/Menkes_Disease.html: The Official Parent's Sourcebook on Menkes Disease