Many organizations are dedicated to improving awareness about Wilson, Progressive Familial Intrahepatic Cholestasis (PFIC) and other Orphan diseases. Such organizations provide important educational resources & support services for patients’ communities:

Wilson Disease

Wilson Disease Association International (WDA)
Website: www.wilsonsdisease.org

EuroWilson
Website: www.eurowilson.com

France
Bernard Pepin Association for Wilson Disease in France Association Bernard Pepin Pour La Maladie de Wilson
Website: www.abpmaladiewilson.fr

National Reference Center for Wilson Disease in France
Centre National de Référence Wilson
Website: www.cnrwilson.fr

Germany
Morbus Wilson
Website: www.morbus-wilson.de

Spain
Asociación Española de Familiares y Enfermos de Wilson (AEFE)
Website: www.enfermedaddewilson.org

A Guide to Wilson's Disease
This leaflet will provide you with information about Wilson’s disease, including symptoms, causes and current treatments. This leaflet is not intended as a substitute for professional medical advice. Always seek the advice of your physician or another qualified health provider.

 

Progressive Familial Intrahepatic Cholestasis (PFIC)

France
Association Maladies Foie Enfants (AMFE)
Website: www.amfe.fr

UK
Children's Liver Disease Foundation
 Website: www.childliverdisease.org

US
PFIC.org 
Website: www.pfic.org

 

Liver and rare diseases

American Association for the Study of Liver Diseases (AASLD)
Website: www.aasld.org

European Association for the Study of the Liver
Website: www.easl.eu

EURORDIS - Rare Diseases Europe
Website: www.eurordis.org

National Organization for Rare Disease (NORD)
Website: www.rarediseases.org

Check Orphan
This nonprofit organization is dedicated to people working with or affected by rare, orphan or neglected diseases.
Website: checkorphan.org

 

Gene and Cell Therapy

American Society of Gene & Cell Therapy (ASGCT) – Education material 
Website: https://www.asgct.org/education

A Guide to Gene Therapy
This leaflet will provide you with information about what gene therapy is, how it works and how it might help someone who has a genetic disease. This leaflet is not intended as a substitute for professional medical advice. Always seek the advice of your physician or another qualified health provider.