Providing support and information to patients with Wilson’s disease
Patient Support
Patient Support
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 diseases.
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.wilsonsdisease.org
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
EuroWilson
Online contact form: eurowilson.com/en/contact/contactus.phtml
Website: www.eurowilson.com
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
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 Disease Support Group UK (WDSG-UK)
Email addresses available at: www.wilsonsdisease.org.uk/WDSG-P5.asp
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
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