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 Association International (WDA)
Bernard Pepin Association for Wilson Disease in France Association Bernard Pepin Pour La Maladie de Wilson
National Reference Center for Wilson Disease in France
Centre National de Référence Wilson
Asociación Española de Familiares y Enfermos de Wilson (AEFE)
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)
Association Maladies Foie Enfants (AMFE)
Children's Liver Disease Foundation
Liver and rare diseases
American Association for the Study of Liver Diseases (AASLD)
European Association for the Study of the Liver
EURORDIS - Rare Diseases Europe
National Organization for Rare Disease (NORD)
This nonprofit organization is dedicated to people working with or affected by rare, orphan or neglected diseases.
Gene and Cell Therapy
American Society of Gene & Cell Therapy (ASGCT) – Education material
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.