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Patients and Families
For Those Affected By Wilson Disease

The WDA Centers of Excellence provide physicians who are well trained in the diagnosis and treatment of Wilson's Disease, physician training and research regarding Wilson disease, broad services needed by Wilson Disease patients and their families, and technical support required by patients (including laboratory metal analysis).

To learn more about the WDAs criteria in designating a Center of Excellence, click here. If your institution is interested in becoming a Center of Excellence, please contact Mary Graper at This email address is being protected from spambots. You need JavaScript enabled to view it..

Great Britain - South East Coast England

Director/Coordinator:  Professor Aftab Ala, Director,Institute of Health and Research (NIHR) Lead for Hepatology South East Coast England, Consultant Gastroenterologist and Hepatologist, Department of Gastroenterology and Hepatology, Royal Surrey County Hospital NHS Foundation Trust and Department of Clinical and Experimental Medicine, University of Surrey,  Guildford, Surrey             

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phone: 0148357112 extension 6990

Team Members:  Professor Aftab Ala –Hepatology; Royal Free Hospital NHS Foundation Trust, London Kings College Hospital NHS Foundation Trust, London –Hepatic Transplantation; Dr Jan Coebergh, MBBS FRCP –Movement Disorders; Dr Sofia Khan, MBBS MDRes FRCP –Neurology; Professor Simon Taylor (MB ChB PhD FCOpth) –Ophthalmology; Dr  Ozan Hancip MBBS MRCPaed –Pediatrics; Dr Ranjit Mahanta  (MBBS MRCPsych MSc DGM) –Psychiatric; Dr Charmian Banks  and Dr Kalliopi Alexandropoulou – Dietitians/Nutritional Consultants; The physical / rehabilitation / occupational  therapy teams will use their recognised expertise in the management of patients with Wilson disease, paticularly in those affected by neurolgical manifestations of Wilson disease – Physical and Rehabilitation Therapy; Sarah Martin –Research Coordinator; There are established expert and  dedicated social services and Team who  will  work with  our patients  to help in the challenges of wilson disease –Social Work; The  speech therapy  team is fully integrated into  the overarching stroke services and will be available  for assessment and management –Speech Therapy;  Dr Chris Harrington BSc (Hon), MSc, PhD, MRSC - Pathology and Diagnostics;  Dr Nayana Lahiri MBBS MRCP - Consultant Clinical Geneticist; Professor Simon de.Lusignan s. BSc, MB BS, MSc, MD(Res), DRCOG, FHEA, FBCS CITP, FRCGP (email This email address is being protected from spambots. You need JavaScript enabled to view it.) -Primary Care & Clinical Informatics / Health Care Management / Clinical and Experimental Medicine; Dr Claire Kelly MBChB MRCP - Clinical Research Fellow (National Institute for Health and Research); Dr Marinos Pericleous MBBS BSc MRCP - Clinical Research Fellow.


India - K.E.M. Hospital
Director - Dr. Ashish Bavdekar
Associate Professor
Consultant Pediatric Gastroenterologist
Liver and Gastroenterology Unit
Department of Pediatrics
T.D.H. Building, Ground Floor
K.E.M. Hospital, Rasta Peth
Pune 411011
Phone: 91-20-66037342
Mobile: 98220 56174
Fax: 91-020-26125603
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it. or This email address is being protected from spambots. You need JavaScript enabled to view it.

Clinics for Wilson Disease:
Mondays and Thursdays 11:00 a.m. - 1:00 p.m.

Other Team Members: Dr. Ashish Bavdekar,Dr. Suhas Wagle – Hepatology; Dr. Ashish Bavdekar – Pediatrics, Hepatology & Hepatic Transplantation; Dr. Pradeep Diwate – Movement Disorders & Neurology; Dr. Shrikant Kelkar – Ophthalmology; Dr. Vasudeo Parlikar – Psychiatry; Mrs. Vaishali Madkaikar – Dietitian; Dr. Arati Chaudhari & Mrs. Bharati Patil – Physical and Rehabilitation Therapy; Dr. Shruti Inamdar – Research Coordinator; Mr. Mahendra Hoge – Social WorkIndia – Mumbai

Heidelberg, Germany

Prof. Karl Heinz Weiss, MD
Internal Medicine IV
Im Neuenheimer Feld 410
69120 Heidelberg Germany

For Appointments:
Mrs. Alexandra Becker
Internal Medicine IV
Im Neuenheimer Feld 410
69120 Heidelberg Germany
Phone: +49 6221 56-6538

Other Team Members: Prof. Markus Weiler, MD PhD - Movement Disorders; Prof. Dr. med. Gerd U. Auffarth, - MD Ophthalmology; Prof. Dr. med. G.F. Hoffmann, MD - Pediatrics; Prof. Dr. Sabine Herpertz, MD - Psychiatry; Dr. Ulrike Zech, MD - Dietitians/Nutritional Consultants; Regina Respondek - Physical and Rehabilitation Therapy; Jessica Langel - Research Coordinator; Mrs. Catrin Bauer, Mrs. Regine Remmert, Mrs. Sandra Wendland - Social Work; Mrs. Nele Wieser, Mrs. Cinja Huber - Speech Therapy; Dr. Med. Petra Wagenlechner, MD - Other.

Jaslok Hospital and Research Center

Director - Dr. Aabha Nagral,
Consultant Adult and Pediatric Hepatologist
O-18, Bhavna Building 2nd floor
Veer Savarkar Road
Prabhadevi Clinic
For appointments: (+91)22 24222160
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
Clinics for Wilson Disease Patients:
Monday, Wednesday and Friday: (4:00 p.m. to 6:00 p.m.)
For appointments, phone: 91-22- 24222160 (after 4 pm)

Other Team Members: Dr. Aahba Nagral – Hepatic Transplantation; Dr. Pettarusp Wadia– Movement Disorders & Neurology; Dr. Atul Ursekar– Ophthalmology; Dr. Fazal Nabi – Pediatrics; Dr. Amit Desai – Psychiatry; Suvarna Sawant – Dietitian; Dr. Ria Mansukhani – Physical and Rehabilitation Therapy; Dr. Priya Malde – Research Coordinator: Bakul Parulekar-Speech Therapy; Bhavna Shah-Social Worker.

Northwestern University

Danny Bega, MD, MSCI
Assistant Professor of Neurology
Division of Movement Disorders
Feinberg School of Medicine
259 E Erie St, Suite 1900
Chicago, IL 60611

Richard M. Green, MD
Chief, Division of Hepatology
Associate Professor of Medicine
Feinberg School of Medicine

Appointments: 312-695-7950
Fax: 312-695-5747

Ashley Talavera, RN (clinical nurse)
Emily Zivin, LCSW (social work)

Lavin Pavillion, 16th Floor
259 E Erie St
Chicago, IL 60611

Eric Gausche, MD -- Assistant Professor of Neuropsychiatry
Michael M. Abecassis, MD – Director, Comprehensive Transplant Center, Chief, Division of Surgery-Organ Transplantation
Onur Melen, MD – Assistant Professor of Neurology and Ophthalmology
Saeed Mohammad, MD - Assistant Professor of Pediatric Hepatology
Joanna Blackburn, MD - Assistant Professor of Pediatric Neurology
Jennifer Goldman, MD – Professor in Neurology & Physical Medicine and Rehabilitation, Shirley Ryan Ability Lab & Northwestern Medicine
Karen Williams, BA – Research Coordinator
Lisa Kinsley - Genetic Counselor

University of California at Los Angeles
Director - Jeff Bronstein, MD, PhD; Coordinator – Henrietta Salazar
UCLA Neurology Department
710 Westwood Plaza Suite C128
Los Angeles, CA 90095-1769
For appointments: Henrietta: (310) 206-9799
Fax: (310) 206-9819
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Other Team Members: Sammy Saab, MD – Hepatology and Hepatic Transplantation; Arik Johnson – Psychologist; Jeff Bronstein-Movement Disorders, Neurology; Joseph Demer, MD- Opthalmology; Dana Hunnes PhD, MPH, RD- Dietition/Nutritional Consultant; Diane Yang- Research Coordinator

University of Michigan Hospital
Director - Fred Askari, M.D., Ph.D.
Associate Professor
Liver Clinic
1st floor Taubman Center Area G
Ann Arbor, Michigan 48109
Phone: 800-333-9013
Fax: 734-763-4574
Appointments 800-333-9013
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Other Team Members: Jeffrey Innis, MD, PhD – Genetic Counselor; Fred Askari, M.D., PhD - Section of Transplantation and Hepatology, Martha Carlson MD, PhD – Pediatrics; Matthew Lorincz, MD, PhD (Adult) and Martha Carlson, MD, PhD(Pediatric) – Movement Disorder Specialist, Neurology; Jonathon Trobe, MD – Opthalmology; Scot Winder, MD – Psychiatrist; Elizabeth Kovan – Research Coordinatior; : Karen Kluin ,MS – Speech Therapy; Kelly Shehan,MS - Dietician

Seattle Children's Hospital
Sihoun Hahn, M.D., Ph.D., Director
Pediatrics; Director, Biochemical Genetics Program
Seattle Children's Hospital
4800 Sand Point Way NE, Mailstop: B-6594
Seattle, WA 98105
Phone: 206-987-7610
E-Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

The pediatric team will see adult patients at the University of Washington. For information/appointments (pediatric and adult) please contact:
Mary Moran E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.
Appointments: Fax referral and records to (206) 985-3121

Other Team Members: Simon Horslen, MB ChB FRCPCH - Director of Transplantation, Pediatric Hepatologist, Pediatric Transplant Hepatologist; Renuka Bhattacharya, MD – Adult Hepatologist; Dararat (Pam) Mingbunjerdsuk, MD – Movement Disorder Specialist, Neurology; Ali Samii, MD – Adult Neurology; Avery Weiss, MD – Opthalmology; Nina de Lacy, MD, MBA – Psychiatry; Melissa Edwar, RD and Sarah Sullivan, RD – Metabolic Nutitionists; Andrea Barry-Smith – Social Work, Edie Anyieni, RN - Nursing; Genetic Counseling – TBD; Mary Moran – Program Administrator.

Yale University Medical Center
Dr. Michael Schilsky, Director
Yale University School of Medicine
333 Cedar Street/1080 LMP
P.O. Box 208019
New Haven, CT 06520-8019

E-Mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

Fed Ex Address:
One Gilbert StreetFMP Bldg.,
Room FMP 408
New Haven, CT 06519

For Appointments: Ms. Donna Christensen phone: 203-737-1592 fax: 203-737-1592

Other Team Members: Uyen To, MD – hepatology, Nigel Bamford, MD - pediatric neurologist, Sukru Emre M.D., David Mulligan MD, Manuel Rodriguez Davalos MD, Section of Transplantation and Immunology, Udeme Ekong MD, Pamela Valentino, MD – Pediatric Hepatologist, Pediatric Transplant Hepatologist; Elan Louis, MD, Amar Patel, MD – Movement Disorder Specialist, Neurology; Susan Forster, MD – Opthalmology, Paula Zimbrean M.D. – Psychiatrists; Kisha Mitchell M.D. – Liver Pathologist; Ricarda Tomlin – Research Coordination; Lenore Hammers LCSW – Adult Social Worker, Michael Joyce LCSW – Pediatric Social Worker; Anne Marie Rivard NPH RD- Registered Worker; Anne Marie Rivard NPH RD- Registered Dietician; Dr. Uyen To, Adult Hepatology, Dr. Rima Fawaz and Pamela Valentino, Pediatric Hepatology, Dr. Amar Patel, Movement Disorders, Neurology, Dr. Paula Zimbrean, Psychiatry.

Watch:   Yale Center of Excellence featured at the AASLD Liver Meeting


Baylor College  -Texas Children's Hospital and St Luke's Hospital 

Center Directors: 
John Vierling, MD Adult Hepatology
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832 355 1400 (Office, 24/7)
713-610-2479 (FAX) 

Sanjiv Harpavat, MD, PhD, Assistant Professor, Department of Pediatrics
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Other Team Members:UNOS Medical Directors of  liver transplantation- Rise Stribling, MD Hepatology/Baylor-St Luke's Medical Center (adult), Surgical Director of liver transplantation- John Goss, MD Transplant Surgery, Clinicians- Norman Sussman, MD Adult Hepatology/GI , Saira Khaderi, MD Adult Hepatology/GI, Ryan Himes, MD Pediatric Hepatology/GI ,Daniel Leung, MD, BS Pediatric Hepatology/GI, Joseph Jankovic, MD Adult Neurology/Movement disorder, Mered Parnes, MD, BA Pediatric Neurology/Movement disorder, Brendan Lee, MD, Ph.D. Genetics, David Coats, MD Ophthalmology, Ayse Arikan, MD Nephrology, Intensive care (Extracorporeal Liver Support), Nutritionist- Stacy Beer, MPH, RD, LD Liver Nutritionist, Neuropsychologist- Susan Caudle, M.A, B.A. Psychology, Social worker- Lucero Gonzalez, LCSW Social work, Child life specialist- Holly Peckover, MS, CCLS Child Life, Psychiatry- TBD Psychiatry Section, Genetic counselor- TBD Genetic counseling, Administration-  Sara Gonzalez-Quezada,Program administrator



Wilson Disease Centers of Excellence Policy

The WDA is a national 501 (c)(3) organization, with global presence in over fifty other countries, serving as an advocate and resource for individuals and families dealing with Wilson´s disease. It disseminates scientific, clinical and adaptive information to its members and the treating community through direct communications, printed materials and its excellent web site ( It has an active membership, regular board and membership meetings, and adequate finances to meet its organizational objectives.

Designation as a Wilson Disease Center of Excellence would likely result in the referral of approximately five new pediatric/adult patients annually. They would be patients with acute and chronic illnesses. Wilson Disease patient will require care form hepatologist, neurologist, psychiatrist, dieticians, physical and rehabilitation therapist, social workers, speech therapist and a hepatic transplantation program. Since the United States´ Wilson disease population reflects the general population, a significant number will be adequately insured.

As a Wilson Disease Center of Excellence, a medial institution would have:
• Access to patients with fascinating and challenging genetic disease who will benefit from, and live normal lives with, first quality medical care
• an opportunity for research in cooper metabolism and its genetic links
• benefit of the WDA´s efforts to support educational outreach to healthcare professionals

While Wilson disease has become a subject of media attention, it is not likely that designation as a Center of Excellence will significantly enhance the institution´s reputation. However, it will augment its educational mission.

In designating an academic medical center as a Center of Excellence, the WDA seeks to identify a medical center which will render the highest quality care to acutely presenting and chronically ill Wilson disease patients involving hepatology, neurology, nutritional consultation, psychiatry, ENT, physical and rehabilitative medicine and speech therapy. As a Center of Excellence, an institution must provide a site where:
• One or more health care professionals will enthusiastically commit to the care of Wilson disease patients and will coordinate every facet of their care
• Physicians are well trained in the diagnosis and treatment of patients with Wilson Disease
• Education of the nest generation of physicians to care for these patients will occur
• Clinical diagnostic laboratory studies for metal analysis and related testing are performed
• Basic research into the underlying pathophysiology of disorders of cooper metabolism is conducted, and new experimental therapies for this disorder can be evaluated
• Patient, family, public and continuing medical education are promoted.

In addition, the medical center, through its designated faculty, must be willing to act as an educational and consultative resource to patients, physicians and other health care professional concerning the diagnosis, treatment and management of Wilson disease. It is also of great importance that communications between the institution and the Wilson Disease Association be easily facilitated as appropriate. The Center of Excellence will be willing to participate and support WDA initiatives (e.g. Tissue Banking, New Born Screening).

In order to be considered for the designation, the interested partly should submit a proposal to the WDA President outlining the institution´s plan to meet the above criteria. Names, qualifications, and prior experience with treating Wilson disease of each team member should be included. The actual selection of the Center of Excellence will be done by the WDA Beard of Directors, with the advice of its Professional Affairs Committee and input from the Medical Advisory Committee. In order to remain a Center of Excellence, WDA will recertify at least once every three years by questionnaire and will keep Website updated. Completion of the questionnaire is required and failure to comply many result in revocation of the Center of Excellence status.

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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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