Alagille Syndrome Clinical Care Program

Alagille Syndrome Links and Resources

If your child has been diagnosed with Alagille syndrome, you probably have many questions and concerns. Knowledge can be a powerful ally as you learn to cope with the many challenges your child faces. That's why we've provided this list of resources for you to explore.

Children's Hospital resources

The Connelly Resource Center for Families is a quiet place to take a break or nap, browse through information on healthcare, finances, parenting and education, do laundry, surf the Internet and more. You can talk with other parents whose children are hospitalized. The Family Learning Center in Connelly offers many classes to help families learn new skills they need to care for their children in the hospital or at home.

The Child Life department helps children and family members cope with the healthcare experience through developmentally appropriate activities, education about and preparation for medical procedures, and emotional support.

Internet Resources

Children’s Hospital does not control and is not responsible for the content on other Web sites, and cannot guarantee their relevance, timeliness or accuracy. Links are provided for information only.

The Alagille Syndrome Alliance

The Alagille Syndrome Alliance is an international support network for people with AGS and their families. It is run by an all volunteer Board of Directors composed of dedicated, committed individuals whose lives have been touched by AGS. The Alliance endeavors to provide a forum for AGS families to meet one another on a regular basis for mutual support and sharing of current information on AGS. It gathers and distributes information about AGS, research studies, and helpful services to families, friends, and health care providers. The Alliance recognizes the wealth of knowledge that has gained through research and encourages AGS families to participate in studies so that they may contribute to the growing information base about this disease. Most importantly, the Alliance exists to support AGS families and celebrate the AGS Community.

Cindy L. Hahn, President
Alagille Syndrome Alliance
10500 SW Starr Drive
Tualatin, OR 97062
Phone: 503-885-0455
E-mail: alagille@earthlink.net
Web: http://www.alagille.org

Cholestatic Liver Disease Consortium (CLiC)

The Children's Hospital of Philadelphia is one of 11 clinical and research sites participating in the Cholestatic Liver Disease Consortium (CLiC), which is part of the Rare Diseases Clinical Research Network (RDCRN). 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. The five diseases studied by the CLiC team are: Alagille Syndrome (AGS), Alpha-1-antitrypsin deficiency (a-1AT), Bile acid synthesis and metabolism defects, Mitochondrial hepatopathies, and Progressive familial intrahepatic cholestasis (PFIC). The RDCRN is funded by the National Institutes of Health, Office of Rare Diseases and National Center for Research Resources. CliC also receives funding from the National Institute of Diabetes, Digestive and Kidney Diseases.

http://www.rarediseasesnetwork.org/clic

The American Liver Foundation

This national, nonprofit health agency is dedicated to preventing, treating and curing liver diseases through research, education and support groups.

1425 Pompton Avenue
Cedar Grove, NJ 07009
Phone: 1-800-GO-LIVER
Web: http://www.liverfoundation.org/

Children's Liver Association for Support Services (C.L.A.S.S.)

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. Their goal is to be both a service to families and a valuable resource for the medical community.

27023 McBean Parkway #126
Valencia, CA 91355
Toll-free: 1-877-679-8256
Local phone/fax: 661-263-9099
Web: http://www.classkids.org/

Gene Tests

The Gene Tests Web site is a publicly funded medical genetics information resource developed for physicians, other healthcare providers and researchers. Gene Tests is funded by the National Institutes of Health.

www.genetests.org

Related reading

  • Print
  • Share

Contact Us