Resources - Wilson's Disease

Overview

Orphalan recognizes the outstanding efforts of the many organizations that have dedicated themselves to improving the awareness of Wilson’s disease and providing support to patients with Wilson’s disease. The following organizations provide important educational resources and support services for the Wilson’s disease community, as well as information about other rare disease.

Patient Support

Wilson Disease Association International (WDA)

5572 North Diversey Blvd.
Milwaukee, WI 53217
Phone: 866-961-0533 or 414-961-0533
Email: info@wilsondisease.org
Website: www.wilsondisease.org

Argentina

Asociación de Apoyo a Pacientes con Enfermedad de Wilson Argentina

https://aapewa.ar/
contacto@aapewa.ar

Brazil

Brazilian Association for Wilson Disease Patients
Brasil Associacao Brasileira dos Doentes de Wilson
Sonia Knopf / Maria Aparecida Mesquita Ribeiror
Rua Sao Joaquim, 188 Vila Galvao
CEP 07064-180 Guarulhos, S. Paulo, Brazil
Phone: 011-6451 7859
Email: associacao@doencadeWilson.org

Bulgaria

Bulgarian Association Wilson Disease (BAWD)
Email: info@wilsonbg.org
Website: www.wilsonbg.org

Denmark

Danish Wilson Disease Patient Association
Wilsonpatientføreningen
Email: info@Wilson.dk
Website: www.wilsons.dk

France

Bernard Pepin Association for Wilson Disease in France
Association Bernard Pepin Pour La Maladie de Wilson
Service de Neurologie
Hôpital Lariboisière
2 Rue Ambroise Paré
75475 Paris Cedex 10
Website: www.abpmaladiewilson.fr

National Reference Center for Wilson Disease in France
Centre National de Référence Wilson
Email: cnr.wilson@lrb.aphp.fr
Website: www.cnrwilson.fr

Germany

Morbus Wilson e.V.
Geschäftsstelle
Zehlendorfer Damm 119
14532 Kleinmachnow
Tel.: +49 30 80 49 84 86
Email: info@morbus-wilson.de
Website: www.morbus-wilson.de

Italy

Associazione Nazionale Malattia di Wilson
Email: info@malattiadiwilson.it
Website: www.malattiadiwilson.it

Netherlands

Dutch Wilson Disease Association
Phone: (033) 46 12 231
Email: info@leverpatientenvereniging.nl
Website: www.leverpatientenvereniging.nl

Poland

Polish Patients’ Society
Website: https://zyciezchorobawilsona.pl/website

Romania

Wilson Disease Association Romania
Website: www.wda-romania.org

Serbia

Humanity Assocation Wilson, Humanitamo Udruženje
Email: office@wilson.org.rs
Website: www.wilson.org.rs

Spain

Asociación Española de Familiares y Enfermos de Wilson (AEFE)
C/Molineta, 1
C.P. 04230 – Huércal de Almería
Phone: +34 634 58 26 80
Email: asociaciondewilson@gmail.com
Website: www.enfermedaddewilson.org

Sweden

Wilsonföreningen
Online contact form: www.wilsonforeningen.se
Website: www.wilsonforeningen.se

Switzerland

Morbus Wilson Schweiz
Email: wilson@hispeed.ch
Website: www.morbus-wilson.ch

United Kingdom

Wilson’s Disease Support Group UK (WDSG-UK)
Email addresses available at: www.wilsonsdisease.org.uk/Site/Pages/Contacts
Website: www.wilsonsdisease.org.uk

Related Organizations

American Liver Foundation

39 Broadway
Suite 2700
New York, New York 10006
Phone: 212-668-1000
Website: www.liverfoundation.org

American Association for the Study of Liver Diseases (AASLD)

1001 North Fairfax Street
Suite 400
Alexandria, Virginia 22314
Phone: 703-299-9766
Email: aasld@aasld.org
Website: www.aasld.org

Canadian Organization for Rare Disorders (CORD), Canada

151 Bloor Street West, Suite 600
Toronto, Ontario M5S 1S4 Canada
Phone: +(416) 969-7464 / 1-877-302-7273
Email: info@raredisorders.ca
Website: www.raredisorders.ca

European Association for the Study of the Liver

The EASL Building
Home of European Hepatology
7 Rue Daubin
1203 Geneva
Switzerland
Phone: +41 (0) 22 807 03 60
Email: easloffice@easloffice.eu
Website: www.easl.eu

EURORDIS – Rare Diseases Europe

EURORDIS Plateforme Maladies Rares
96, rue Didot
75014 Paris
France
Phone: +33 (1) 56-53-52-10
Website: www.eurordis.org

Greek Alliance for Rare Disease

The Greek Alliance Of Rare Disease
Mrs. Marianna Lambrou
Timotheou St 99-101 , 16232 Athens – Greece
Phone: 302 107 660 989
Email: gr-pespa@otenet.gr
Website: www.pespa.gr/en/pespa

Le Forum Maladies Rare, France

Phone: 01 56 53 81 36
Online contact form: www.maladiesraresinfo.org/contact/par-email.html
Website: www.maladiesraresinfo.org

National Organization for Rare Disease (NORD)

1779 Massachusetts Avenue
Suite 500
Washington, DC 20036
Phone: (202) 588-5700
Online contact form: www.rarediseases.org/about/contact-us
Website: www.rarediseases.org

Rare Diseases India

Foundation for Research on Rare Diseases and Disorders (FRRDD)
C252 Kandasamy Salai
Periyar Nagar, Chennai 600 082
India
Email: contact@rarediseaseindia.org
Website: www.rarediseasesindia.org

View References

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Sternlieb I. Hepatology. 1990;12(5):1234-9.
National Institute of Diabetes and Digestive and Kidney Diseases. Wilson’s disease. 2022. Available at: https://www.niddk.nih.gov/health-information/liver-disease/wilson-disease. [Last accessed: February 2022].
European Association for Study of Liver (EASL) . J Hepatol. 2012;56(3):671-85.
Rodriguez-Castro KI, Hevia-Urrutia FJ, Sturniolo GC. World J Hepatol. 2015;7(29):2859-2870.
Campellone J V. Am J Clin Nutr. 1995;61(1):162.
Cuprior 150 mg film-coated tablets Summary of Product Characteristics. Available at: https://www.medicines.org.uk/emc/product/10100/smpc#gref.
Trientine dihydrochloride Tillomed 25 mg capsules Summary of Product Characteristics. Available at: https://www.medicines.org.uk/emc/product/11626/smpc#gref.