Rare Liver Diseases Resources

Global Liver Institute has curated this list of external rare liver disease resources. For more resources, please return to our website on February 25th for the publication of our Pediatric and Rare Liver Diseases Advocacy Organization Landscape Report.

Rare Disease Organizations

• Alagille Syndrome Alliance 

• Alpha-1 Foundation 

• AMAF Monza Onlus (Italy)

• American Association for the Study of Liver Diseases

• American Autoimmune & Related Diseases Association Inc.

• American College of Gastroenterology (ACG) 

• American Gastroenterological Association

• American Hemochromatosis Society 

• Amyloidosis Foundation

• Associazione Malattie Autoimmuni Del Fegato (Amaf Monza Onlus) (Italy)

• Autoimmune Hepatitis Association 

• Children’s PSC Foundation

• Cholangiocarcinoma Foundation 

• Community Liver Alliance

• Digestive Disease National Coalition 

• European Reference Network (ERN RARE-LIVER)

• EURORDIS (Rare Diseases Europe)

• Everylife Foundation for Rare Diseases

• Foundation of the National Lipid Association (FNLA)

• Genetic and Rare Diseases (GARD) Information Center 

• Liver Patients International  

• National Organization for Rare Diseases (NORD)

• National Urea Cycle Disorder Foundation 

• PBC Foundation 

• PBCers Organization 

• Progressive Familial Intrahepatic Cholestasis Web Group

• PSC Partners Seeking a Cure

• PSC Support

• The Assistance Fund (TAF)

• Wilson’s Disease Association 

Rare Disease Registries 

Collecting data is crucial to understanding rare diseases, thereby informing research and driving innovative solutions. Do your part and contribute to rare liver disease research by participating in a registry.

• List of Registries | National Institutes of Health (NIH)

• Allagile Syndrome Rare Disease Registry: CoRDS — the Coordination of Rare Diseases at Sanford

• Alpha-1 Research Registry

• Autoimmune Research Network (ARNet) 

• Autoimmune Registry

• Autosomal Recessive Polycystic Kidney Disease  (ARPKD) and Congenital Hepatic Fibrosis (CHF) Patient Registry

• Genetic Testing Registry: Congenital Hepatic Fibrosis

• IAMRARE™ Registry Program - NORD (National Organization for Rare Disorders)

• Registries for Rare Diseases - IQVIA

• National Research of Registry for Neonatal Systemic Lupus (RRNL)

• Orphanet  

• Patient Registry - PBCers.org

• PSC Partners Seeking a Cure - Patient Registry

• PFIC Patient Registry | PFIC Network | Register a Patient

• RaDar National Institute of Health 

• Wilson’s Disease Association: Patient Registry

• United States Immunodeficiency Network (USIDNET)

• Urea Cycle Disorders Consortium