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Our Work

At Orphalan we identify, develop and provide access to innovative treatments for patients with rare diseases.

In Rare Diseases

Wilson Disease

What is Wilson disease?

What causes Wilson disease?

Hepatic

Scarring of the liver (cirrhosis) which prevents normal functioning. Liver failure can occur slowly over years (chronic), or suddenly (acute).

Neurologic

Tremors, speech difficulties, migraine headaches, insomnia, and even seizures can occur

Psychiatric

Psychiatric symptoms might include depression and personality changes.

Other

The kidneys and bones can also be affected in Wilson Disease, potentially causing kidney stones or arthritis, respectively. Dark rings around the iris (colored part) of the eye or cataracts may occur in some people.

How is Wilson Disease Treated?

With Patients

Patient Associations

United States

Wilson Disease Association
224 W 35th Street Ste 500
#676
New York, NY 10001
Phone: (00) 1-866-961-0533
Email: info@wilsondisease.org
Website: www.wilsonsdisease.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

Finland

The Finnish Movement Disorders Association – Wilson’s Disease section
Website: www.liikehairio.fi

France

Bernard Pepin Association for Wilson Disease in France
Association Bernard Pepin pour la Maladie de Wilson
Hopital Fondation Adolphe de Rothschild
29 rue Manin 75019 Paris
Wesbite:
www.abpmaladiewislon.fr

National Reference center for Wilson Disease in France
Centre National de Référence Wilson
Hopital Fondation Adolphe de Rothschild
29 rue Manin 75019 Paris
Email : crmr.wilson@for.paris
Wesbite : www.cmrwilson.com

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: www.zyciezchorobawilsona.pl

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

Switzerland

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

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

Rare Disease Organisations

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

Our Work With the Medical Community

Investigator Initiated Research (IIR)

Areas of interest

Unrestricted educational grants / donations

Wilson Disease Registry

The International Wilson Disease (iWD) Registry was established in 2021 to describe the natural history of treated Wilson Disease. With more than 340 patients enrolled by January 2024, from participating centres in the UK, France, Belgium, Spain, Germany, Poland and Saudi Arabia, the Registry is generating a wealth of data designed to identify unmet needs of patients and research priorities. Orphalan sponsors the Registry.

Find out more

Our Research