Wilson Disease Centers of Excellence

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 [email protected].


United States Centers of Excellence

Baylor College –Texas Children’s Hospital and St Luke’s Hospital

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

Sanjiv Harpavat, MD, PhD, Assistant Professor, Department of Pediatrics

[email protected]
832-822-3671

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


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: [email protected]

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: [email protected]

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


Northwestern University

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

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

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

Contacts:
Margaret Sullivan, RN (clinical nurse)
Emily Zivin, LCSW (social work)

Location:
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
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
ZsaZsa Brown, BA – Research Coordinator
Lisa Kinsley – Genetic Counselor

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: [email protected]

The pediatric team will see adult patients at the University of Washington. For information/appointments (pediatric and adult) please contact:
Mary Moran E-mail: [email protected]
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.


Atrium Health Wake Forest Baptist

Sean R. Rudnick, MD., Assistant Professor
Department of Internal Medicine
Section on Gastroenterology & Hepatology
Medical Director – Hepatology
E-Mail: [email protected]

For appointments contact:
Dee Faust
[email protected]
Phone: (336) 713-1442


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: [email protected]

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

For Appointments: Naeroby, phone: 203-737-1592 fax: 203-737-1592

Other Team Members: Uyen To, MD – hepatology, Nigel Bamford, MD – pediatric neurologist, David Mulligan MD, Section of Transplantation and Immunology, Udeme Ekong MD, Pamela Valentino, MD – Pediatric Hepatologist, Pediatric Transplant Hepatologist; Amar Patel, MD – Movement Disorder Specialist, Neurology; Paula Zimbrean M.D. – Psychiatrists; Ilke Nabantoglu – 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


Outside the United States Centers of Excellence

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

[email protected]

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 [email protected]) -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.


Heidelberg, Germany

Director/Coordinator
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.


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
India
Phone: 91-20-66037342
Mobile: 98220 56174
Fax: 91-020-26125603
E-mail: [email protected] or [email protected]

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

Other Team Members: Dr. Ashish Bavdekar – Pediatric Hepatology & Liver Transplant; Dr. Suhas Wagle – Adult Hepatology;  Dr. Pradeep Diwate – Movement Disorders & Neurology; Dr. Abhijeet Botre – Pediatric Neurology;  Dr. Jyoti Sharma – Pediatric Nephrology;  Dr. Sanjay Shah – Ophthalmology; Dr. Vasudeo Parlikar – Psychiatry; Mrs. Smita  Kokitkar – Dietitian; Mrs. Bharati Patil – Physical and Rehabilitation Therapy; Dr. Shruti Inamdar – Research Coordinator; Mr. Mahendra Hoge – Social Work

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
Mumbai-400025
India
For appointments: (+91)22 24222160
E-mail: [email protected]
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.


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 (https://www.wilsondisease.org). 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.

WILSON DISEASE ASSOCIATION

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