Patient support groups in the management of Wilson disease

Patient support groups serve an important function for those affected by a disease but especially for people with a rare disease. Because of the complexity of Wilson disease there are some unique and difficult problems faced by groups that advocate for these patients. We give a comparative overview of the differences between groups that support people with more common diseases and groups that serve the rare disease population. The history and current status of the Wilson Disease Association and other worldwide Wilson disease groups are described and information about other organizations that support Wilson disease in additional ways is explained. The specific challenges faced in the support of Wilson disease patients are outlined and possible solutions proposed. Drawing from experience in speaking with many patients, we discuss some of the most common questions that are asked by patients who are seeking a possible diagnosis or are already on treatment. There are many options for improving patient advocacy efforts in the future that we hope will be accomplished.