Support for Chronic Illness
If you have a chronic liver disease, such as cirrhosis, hepatitis C or liver cancer, it’s understandable that you, your family members and caregivers may experience a roller coaster of emotions, and have many questions.
At this difficult time, we want you to know you’re not alone: The American Liver Foundation offers, or can refer you to, a wide range of support services and resources.
Not only can you find information relating to your type of liver disease; you also have the opportunity to reduce your level of stress by sharing your experience as a patient with other patients.
We invite you to seek help from the following sources of information and support. Most important, we hope you can take comfort, be reassured, and renew your strength knowing that others care about you.
RESOURCES IN THIS ARTICLE
- AMERICAN LIVER FOUNDATION: Resources
- INSPIRE: Connect With Other Patients with Liver Disease
- NEEDYMEDS: A Resource for Prescription Medication Assistance
- CARING BRIDGE: Connect, by Creating Your Own Website
- RELATED LINKS
AMERICAN LIVER FOUNDATION RESOURCES
Our HelpLine is available to answer questions about liver disease and liver wellness. This resource provides you with educational support and information on local resources including health care providers. To reach our HelpLine, call 1-800-GO-LIVER (1-800-465-4837).
Find a Local Support Group
Our nationwide network of divisions and offices offer a comprehensive range of resources and activities, including community-based support groups. (Note: They are not American Liver Foundation support groups.)
Download free educational materials from the American Liver Foundation’s website—you can find invaluable information on various types of liver disease and other related topics. Select your educational materials here, which include hand-outs, brochures and guides in various languages.
Tips for Caregivers
If you take care of a liver patient—including physical, emotional and spiritual assistance—we have advice as to how you can manage what can be a very demanding situation.
INSPIRE: CONNECT WITH OTHER LIVER DISEASE PATIENTS
The Inspire.com website builds online health and wellness communities for patients and caregivers, in partnership with national patient advocacy organizations. In fact, Inspire.com has more than 80 exclusive national patient organization partnerships and over 300,000 members.
As we recognize the value of patient engagement, we have partnered with Inspire.com to create a global resource community focused on liver disease.
Take action now to become a member of the American Liver Foundation group, complete your profile, and join the specific liver disease discussions that interest you.
NEEDYMEDS: A RESOURCE FOR PRESCRIPTION MEDICATIONS
The website NeedyMeds.org is devoted to helping people in need find assistance programs to help them afford their medications and costs related to health care.
Take action now: Log on to http://www.needymeds.org/resourcepages/liver_disease.htm for guidance as to how you may find assistance paying for your medications.
CARINGBRIDGE: CONNECT BY CREATING YOUR OWN WEBSITE
CaringBridge.org offers you the ability to manage your very own free private website. The site is a secure, personal online space where you can post health updates to keep friends and family informed.
We have partnered with CaringBridge.org so as to make your journey with liver disease easier to cope with.
To create your own website, log on to www.CaringBridge.org/liverfoundation.
These organizations and resources may be of help to you as you cope with your chronic liver disease.
(Note: These links to outside websites are not maintained by the American Liver Foundation. The Foundation and The Liver Lowdown newsletter are not responsible for the content on these sites and we do not endorse any site to which we are linked. The information provided is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her physician or other health care provider.)
National Digestive Disease Information Clearinghouse (NDDIC)
National Institutes of Health (NIH)“The Clearinghouse provides information about digestive diseases to people with digestive disorders and to their families, health care professionals, and the public.”
Caring Ambassadors Program
“The Caring Ambassadors Hepatitis C Program is a national nonprofit organization devoted exclusively to meeting the needs of the hepatitis C community.”
CarePages websites are free patient blogs that connect friends and family during a health challenge.”
Hep C Connection
“Based in Denver, we offer a variety of educational and support opportunities for people living with hepatitis C, their families and friends, and healthcare providers.”
“Search our database to find a hepatitis C support group in or near your area. To start, please choose your state or the target state you want to search.”
Hepatitis Education Project
“The Hepatitis Education Project works to raise awareness about the facts concerning hepatitis patients and the resources available to help those who live with the disease.” Hepatitis support groups in Seattle and Tacoma.
Children’s Liver Association for Support Services (C.L.A.S.S.)
“C.L.A.S.S. was founded out of the recognized need for an organization dedicated to addressing the emotional, educational and financial needs of families with children affected by liver disease and transplantation.”
NYC Hepatitis B Coalition and NYC Hepatitis C Task Force
“Form a city-wide network” Includes patient support groups in New York City.
St. Luke’s Texas Liver Coalition
“The Texas Liver Coalition started in 1995 as a Hepatitis C Support Group, in 2002 we were incorporated into the St. Luke’s Episcopal Hospital and became the St. Luke’s Texas Liver Coalition…TLC continues to run 20+ Support Groups, provide twice a month Hepatitis C Treatment Training Classes (teach patients that are getting ready to go through treatment)…”
“Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.”
Transplant Recipients International Organization (TRIO)
“TRIO is an independent, not-for-profit, international organization committed to improving the quality of life of transplant candidates, recipients, their families and the families of organ and tissue donors.”
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