Partnering for Care of Wilson Disease

Abstract

Wilson disease (WD) is a rare multi-system disorder that can resemble other diseases. Primary physicians often recognize many signs and symptoms of the disorder but may need to partner with specialists to help with disease diagnosis, treatment, and monitoring. Ideally patients should continue to work with their primary physician for their general health needs, and for their WD, they should create a partnership between the patient, their primary physician, and a specialist with experience treating this rare disorder. Specialists of the several disciplines that can offer assistance with the care of WD patients can be found at Centers of Excellence (COE) that receive their designation from the Wilson Disease Association (WDA). We describe what the benefits being evaluated and treated at a COE are for patients.