Patient Support

Finding Support Services

The American Liver Foundation provides many resources and support services for people with HE and their family, friends and caregivers. An outline of these services and where to access them follows below:

There are other advocacy groups and professional associations that can also be valuable sources of information for learning more about your condition, connecting with other people who have HE and their caregivers, and finding doctors who specialize in treating this condition.

  • National Organization for Rare Disorders (NORD)
    55 Kenosia Avenue
    Danbury, CT 06810

    Web: www.rarediseases.org
    Phone: 203-744-0100
    Fax: 203-798-2291
    Email: orphan@rarediseases.org

    NORD provides information about rare diseases, patient assistance programs, and resources for patients and their families, medical professionals and the public.

  • American Gastroenterological Association (AGA)
    4930 Del Ray Avenue
    Bethesda, MD 20814

    Web: www.gastro.org
    Phone: 301-654-2055
    Fax: 301-654-5920
    Email: member@gastro.org

    The patient center section of this Web site offers information about digestive conditions, procedures, diet and medications, and a gastroenterologist (GI) physician locator service. In addition, it rates the accuracy of information provided on certain patient-oriented Web sites.

  • American College of Gastroenterology (ACG)
    6400 Goldsboro Road
    Bethesda, MD 20817

    Web: www.gi.org
    Phone: 301-263-9000
    Email: info@acg.gi.org

    The patient section of this Web site helps you to locate a physician liver expert in your area, provides information about digestive health topics and procedures, and has the latest news and updates on GI health.

In addition, pharmaceutical companies have support services for people taking their medications.

  • Salix Pharmaceuticals, makers of rifaximin (Xifaxan®), has a program that offers a variety of resources to help you understand and manage your condition, called Hepatic Encephalopathy Living Program (H.E.L.P.). It includes:
    • Educational materials
    • 24-hour access to a toll-free patient hotline staffed by registered nurses
    • Support to help you stay on treatment including prescription and appointment reminder calls

    Visit them on the Web at http://www.xifaxan550.com for more information.