Wilson Disease

Wilson Disease Resources & Information

by Robert S. Stall MD
(has Wilson Disease himself)

RobertStallMD_7200_pp-300Dr. Stall’s Story | Information | On-Line Discussion Group | Organizational Links | Research | Slideshows | Wilson Disease Experts & Associations

Patient registry study

Talk to first year UB medical students – video by Dr. Stall 3/21/18

Talk to first year UB medical students – slide show (pdf) by Dr. Stall 3/21/18

YouTube video compilation by Dr. Stall (as of 2/10/18)

Enter the Wilson Chat Room to ask questions
and dialogue with other about Wilson Disease!

Wilson Disease Association International

StallRobert 1989 KF ring L eyeDr. Stall’s left eye with K-F Ring – August, 1989

Wilson Disease (Wikipedia)
History of Wilson Disease (from whonamedit.com)
Wilson Disease Mutation Database

Wilson photo
About Dr. Samuel A. K. Wilson (1878-1937)

Scheinberg photoI. Herbert Scheinberg Obituary (c. 1919 – 4/4/09)


Slide Shows

The Science
Dr. Moore to 1st Year UB Medical Students 3/24/08
Dr. Novak to 1st Year UB Medical Students 3/24/10

The Personal Side
Dr. Rob Stall to 1st Year UB Medical Students 3/7/16


Dr. Stall’s WD Story

Read
Audio (from 1989) 4 min
Video of Dr. Stall 8-14-1989 first dose of penicillamine – 2 min
Video of Dr. Stall 8-29-1989 videotape by Dr. Munschauer – 2 min
Video of Dr. Stall 9-5-1989 description of symptoms & diagnosis – 43 min


Information
Note: Treatment information may not be current

Adverse Event Reporting
Trientine http://www.trientine.com/

Association with Chromosome 13 (Google search – multiple links)
Copper Content of Food (from USDA 8-19-05)
Foods High In Copper
Dr. Stall’s Wilson Disease Web Links
Frequently Asked Questions (FAQ’s) About Wilson Disease
Wilson Disease Diagnosis & Treatment Guidelines (AASLD 2008)
Wilson Disease Diagnosis Algorithm (Hepatology 2008)
Wilson in Septuagenarian Siblings (Hepatology 2005)

See the Wilson Disease Association web site for up-to-date treatment recommendations GALZIN (Zinc acetate) – for maintenance or treatment of presymptomatic patients
Galzin drugs.com
Galzin (Wilson Disease Association International web site) | Zinc Availability World-Wide
Liver transplantation Wikipedia | Yale-New Haven Hospital
NIH – Wilson Disease
Penicillamine (Cuprimine) (from the PDR) (including Contraindications, Warnings and Adverse Reactions)
USDA National Nutrient Database – Copper


On-Line Discussion Group

Sign-up: WILSONS-LIST
The listserv for people interested in the diagnosis & treatment of Wilson Disease.


Organizations – Information and Support

National Organization of Rare Diseases (NORD)
http://www.rarediseases.org/

Orphanet
http://www.orpha.net/consor/cgi-bin/Disease_Search_Simple.php?lng=EN&diseaseGroup=Wilson+disease

Denmark
http://www.wilsons.dk/

France
http://www.abpmaladiewilson.fr/

Germany
http://www.morbus-wilson.de

Israel (in Hebrew only)
http://hfmws.110mb.com/

Romania
http://www.wilsonsa-romania.org

Sweden
https://www.socialstyrelsen.se/rarediseases/wilsondisease

United Kingdom
http://www.wilsonsdisease.org.uk/

USA (WDA International)
http://www.wilsonsdisease.org/

Wilson France database
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2958411/


Research

Top Authors

A Patient’s Guide to Wilson Disease and Frequently Asked Questions about Copper

Wilson Disease: A Clinician’s Guide to Recognition, Diagnosis, and Management

Previous Studies

Efficacy and Safety Study of in Adult Wilson Disease Patients
Protocol 310–Treatment of Wilson Disease With Zinc
Protocol 801–Initial Therapy of Wilson Disease with Ammonium Tetrathiomolybdate (TM)


Worldwide Wilson Disease Experts & Associations

Fred Askari, MD PhD
University of Michigan Medical Center, Ann Arbor, MI
Web Profile | UM Wilson Disease Center of Excellence

Michael L. Schilsky, MD
Yale School of Medicine, New Haven, CT
Web Profile
YouTube video – Wilson Disease Research Center, Yale University

Click here for other Wilson experts in the USA and around the world

This page designed by Dr. Rob Stall
Established 3/30/1996; last update 12/9/2023
Copyright 1996 -2023 Robert S. Stall, MD

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