Many organizations are dedicated to improving awareness about Wilson, Progressive Familial Intrahepatic Cholestasis (PFIC), Cerebrotendinous xanthomatosis (CTX) and other Orphan diseases. Such organizations provide important educational resources & support services for patients’ communities:
WILSON DISEASE
Centre National de Référence Wilson
cnrwilson.fr
Wilson Disease Association International (WDA)
US Patients Association
EuroWilson
Bernard Pepin Association for Wilson Disease in France Association Bernard Pepin Pour La Maladie de Wilson
www.abpmaladiewilson.fr
PROGRESSIVE FAMILIAL INTRAHEPATIC CHOLESTASIS (PFIC)
LIVER AND RARE DISEASES
www.aasld.org
www.easl.eu
www.eurordis.org
National Organization for Rare Disease (NORD)
This nonprofit organization is dedicated to people working with or affected by rare, orphan or neglected diseases.
checkorphan.org
GENE AND CELL THERAPY
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.
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.