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For Those Affected By Wilson Disease

Your WDA membership is important. There is power in numbers. We would like to see our membership grow to encompass all affected by Wilson disease, worldwide. When we speak out about Wilson disease to media, pharma, congress, medical and other organizations, our voice will be strong as one and our message will be clear.

As a member, you have the opportunity to communicate your concerns, share your experiences, learn about the most recent advances in Wilson disease treatment and research, and contribute to important decisions that need to be made so the WDA can be a strong patient advocacy group.

Member Rights 

When you choose one of the membership levels on the Membership Form, in addition to the benefits listed for each level, you are entitled to:

  • vote in annual elections.
  • vote on proposed changes to the WDA Bylaws.
  • seek nomination to be a member of the WDA Board of Directors.
  • access to your member profile and donation history at  
  • access to a "Members Only" area on the WDA website.

Types of Membership 

The membership of the WDA consists of Members, Honorary Members, Organizational Members, and Professional Members.


There shall be no more than five membership categories, as established by the Board of Directors. Members of WDA have the right to vote. The Board of Directors prescribes membership dues. Any person who makes application and pays the prescribed dues is a member.

*Persons and family members affected by Wilson disease who are unable to pay dues but notify the WDA of their desire to be counted as members have regular membership status. If you are unable to pay dues, please fill out the renewal application with a note to that effect. You will be put on the membership list.

Honorary Members 

Honorary membership is extended to people who have rendered outstanding service on behalf of persons with Wilson disease. All Honorary Members are elected by the Board of Directors. Such members pay no dues, have no vote, and are not eligible to hold office.

Organizational Members

Organizations interested in activities related to the purpose of the Association may, upon application and payment of prescribed dues, be elected to organizational membership by the Board of Directors. Such members have one vote if a non-profit organization and no vote if a for-profit organization. Organizational members are not eligible to hold office. Each organizational member designates one individual as its representative.

Professional Members 

Physicians and other health care professionals who pay dues at the professional rate have the same privileges of membership as an individual member.

Term of Membership

Membership in the WDA is for a term of one year, from January 1 through December 31 of each year. Dues are due and payable on January 1st each year. Members who join for the first time after September 1st remain in good standing through December 31 of the following year.

At the end of one year membership, renewal notifications are mailed. The WDA does not provide membership cards. If you are unable to pay dues, please fill out the renewal application with a note to that effect. You will be put on the membership list.


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Common Queries and Questions

The course of liver disease in Wilson's disease stands in contrast to other forms of cirrhosis for many people. The chronic liver injury in Wilson's disease is caused by excess free copper, and the liver disease often stabilizes or even improves once the excess copper is treated with zinc acetate maintenance therapy. While some people do progress to need liver transplantation, others may actually see long-term improvement in their liver function over time. It is important to be attentive to issues such as immunizations for viral hepatitis, avoiding excess alcohol consumption, and treating complications of portal hypertension in order to give the liver its best chance to mend. Fred Askari, M.D., Ph.D. Assistant Professor Director, Wilson's Disease Center of Excellence Clinic at the University of Michigan
Generally, the brain is affected symmetrically with excess copper deposition, although symptoms can be worse on one side of the body than another. This may have to do with factors of asymmetric neurologic development, such as being right or left-handed. The copper is often seen most prominently in the basal ganglia, the area deep within the brain that coordinates movements. The face of the giant panda sign refers to a characteristic appearance of the basal ganglia in advanced Wilson's disease. This is a description of the appearance of the basal ganglia wherein one can get an impressionists image of the face of a giant panda. Fred Askari, M.D., Ph.D. Assistant Professor Director, Wilson's Disease Center of Excellence Clinic at the University of Michigan
High serum copper is not an indication of Wilson disease. Since most Wilson patients have a low ceruloplasmin they actually have a lower than normal serum copper. Ceruloplasmin is the protein that binds with copper to remove it from the body. It is the unbound (to ceruloplasmin) copper that is free to roam around the body and accumulate in organs causing Wilson disease damage. An elevated serum copper is more often due to an elevation of the level of serum ceruloplasmin since it contains ~90% of the circulating copper bound to it. Elevations of ceruloplasmin can occur with inflammation, in response to estrogen therapy and in pregnancy. Note: The exception to this is when there is severe liver injury (acute liver failure) caused by Wilson disease. This causes very large amounts of copper to be released into circulation and causes markedly elevated serum copper. When this occurs, patients are very ill and usually have jaundice (yellow eyes and skin color) and very abnormal lab results with respect to liver function and blood coagulation. - Michael Schilsky, M.D., Weill Cornell School of Medicine, WDA Medical Advisor
Hepatic: Asymptomatic hepatomegaly; Isolated splenomegaly; Persistent elevated AST, ALT; Fatty Liver; Acute hepatitis; resembling autoimmune hepatitis; cirrhosis (compensated or decompensated); fulminant hepatic failure Neurological: Movement disorders (tremor, involuntary movements); drooling, dysarthria; rigid dystonia; pseudobulbar palsy; seizures; migraine headaches; insomnia Psychiatric: Depression; neuroses; personality changes; psychosis Other symptoms: Renal abnormalities: amino-aciduria and nephrolithiasis; skeletal abnormalities: premature osteoporosis and arthritis; cardiomyopathy, dysrhythmias; pancreatitis; hypoparathyroidism; menstrual irregularities: infertility, repeated miscarriages From: A Diagnostic Tool for Physicians (3/04)
If the water is over 0.1 ppm (parts per million) (which is 0.1 mg/L), I recommend an alternative source. While 0.1 ppm isn't particularly hazardous, it indicates that significant copper is coming from somewhere, and at certain times or under certain circumstances the level might be quite a bit higher. George J. Brewer, M.D. Department of Human Genetics, University of Michigan Medical School
Yes. Since Wilson's disease often affects the liver, many Wilson’s disease patients cannot afford additional injury to the liver. Hepatitis A or Hepatitis B vaccine is as safe for Wilson's disease patients as it is for others. - H. Ascher Sellner, M.D.

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