Related Links

• Informational

• Advocacy Groups and Organizations

Informational

Biliary Atresia from Etiology to Therapy
A European site funded by Ethicon, a Johnson & Johnson Company. Resources on biliary atresia include various references, an online forum, and links to the European Biliary Atresia Registry (EBAR).

Liver Diseases and Treatments
Biliary Atresia reference page hosted by Cincinnati Children’s Hospital.

Medline Plus
A service of the U.S. National Library of Medicine and the National Institutes of Health.

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Advocacy Groups and Organizations

Alagille Syndrome Alliance

Alpha-1 Association
The Alpha-1 Association is a not-for-profit, membership organization founded in 1991. People who are affected by Alpha-1 govern this international organization. Its mission is "to identify those affected by Alpha-1 Antitrypsin Deficiency and to improve the quality of their lives through support, education, advocacy, and research." That mission is fulfilled through an international network of support groups; a Peer Guide program to help newly diagnosed individuals; and a number of educational materials. The Alpha-1 Association advocates for the community on a host of issues including genetic privacy and discrimination, insurance issues, and product safety and availability. The Association also promotes research and supports the programs of the Alpha-1 Foundation.

AlphaNet
AlphaNet, a not-for-profit disease management company, currently employs more than 20 coordinators with Alpha-1. AlphaNet provides a wide range of support services to Bayer Direct subscribers, oversees clinical trials involving Alpha-1 therapies, and is developing a comprehensive disease management program to improve the quality of life for those affected by Alpha-1. Since its start in 1995, AlphaNet has contributed over $4 million to support Alpha-1 Antitrypsin Deficiency and Alpha-1 Community programs.

Alpha-One Foundation
The Alpha-1 Foundation is dedicated to providing the leadership and resources that will result in increased research, improved health, worldwide detection and a cure for Alpha-1 Antitrypsin Deficiency (Alpha-1). Alpha-1 is a genetic disorder that can cause liver and lung disease in children and adults.

American Liver Foundation
The American Liver Foundation is a national, voluntary not-for-profit organization. It has been dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education and advocacy since 1976.

The Biliary Atresia & Liver Transplant Network
Also known as B.A.L.T., the network is a nonprofit corporation initiated by two mothers of children who were suffering from biliary atresia who wanted to find a way to overcome the limited information and support for this disease.

Canadian Liver Foundation
The Canadian Liver Foundation is championing the battle against liver disease through research and education into the causes, diagnoses, prevention and treatment of liver disease in all its forms.

Children's Liver Association for Support Services
The Children's Liver Association for Support Services (C.L.A.S.S.) is an all-volunteer, nonprofit organization dedicated to serving the emotional, educational, and financial needs of families coping with childhood liver disease and transplantation.

Children's Liver Disease Foundation
A charity from the UK dedicated to fighting all liver diseases of childhood. By funding pioneering research, providing education and giving professional, caring support to families and patients.

Cholestatic Liver Disease Consortium (CLiC)
The Cholestatic Liver Disease Consortium (CLiC) is a collaborative team of doctors, nurses, research coordinators, and patient support organizations throughout the US and London, UK working together to improve the lives of children and families dealing with rare Cholestatic Liver Diseases. The goal of the CLiC team is to investigate five genetic causes of intrahepatic cholestasis and to train the next generation of clinical researchers.

Liver Families
An international online support group for families whose lives have been touched by pediatric liver disease and transplant.

United Mitochondrial Disease Foundation
The United Mitochondrial Disease Foundation’s (UMDF) mission is to promote research and education for the diagnosis, treatment and cure of mitochondrial disorders and to provide support to affected individuals and families. UMDF supports scientific collaboration and family networking through international symposia and is building an endowment to sustain research through the millennium.

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