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DISCLAIMER: The information below is provided as a public service. We have diligently attempted to verify the links, but the information contained there has not been validated nor is it endorsed by the author.
Providing this information is not an attempt to practice medicine or provide specific medical advice and should not be used to make a diagnosis or replace or overrule the judgement of your qualified health care professionals. You should not rely on this website or any of these links in an emergency situation or if you are in serious need of immediate treatment.
USERS ARE STRONGLY ENCOURAGED TO CONSULT WITH A QUALIFIED HEALTH CARE PROFESSIONAL FOR ANSWERS TO SPECIFIC, PERSONAL QUESTIONS.
Information That May Be Useful to Potential Transplant Candidates and Their Families is listed below.
Association of Organ Procurement Organizations: Resource Links A valuable and diverse list of links to government agencies, private foundations, videos, etc. pertaining to organ donation and transplantation.
OrganDonor.gov – The U.S. Government Information on Organ and Tissue Donation and Transplantation. In the United States, the Health Resources and Services Administration of the U.S. Department of Health and Human Services has oversight of the Organ Procurement and Transplantation Network (OPTN). This website includes a brief animated video explaining the transplant waiting list, how someone becomes a donor, the process of matching organs, and signing up to share the gift of life.
The Advisory Board’s research memberships “provide expert guidance, best practices, and forecasting and analytical tools related to strategic, clinical, and operational topics affecting leaders across hospital and non-hospital health care organizations, domestic and international businesses, and higher education.” Here is a feature they offered in November, 2011. “The Advisory Board Congratulates Members Named as Top Transplant Hospitals.”
American Liver Society’s List of Liver Transplant Hospitals. A simple listing of various transplant centers in the United States and their phone numbers.
Visit the Scientific Registry of Transplant Outcomes to view waiting lists and outcomes data for many transplant programs around the nation.
“Organ Allocation Calculators.” OPTN: Organ Procurement and Transplantation Network. Health Resources and Services Admin., US Dept. of Health & Human Services.
“Organ Transplantation Policy Management.” OPTN: Organ Procurement and Transplantation Network. Health Resources and Services Admin., US Dept. of Health & Human Services.
“Liver Disease Treatment, Liver Transplantation” Information on liver transplantation, treatment for liver cancer and hepatitis from The Center for Liver Disease and Transplantation, Columbia University Medical Center, New York, NY.
The National Digestive Diseases Information Clearinghouse (NDDIC). Established in 1980, the Clearinghouse provides information about digestive diseases to people with digestive disorders and to their families, health care professionals, and the public. The NDDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about digestive diseases.
VeryWell.com A health & wellness site that provides simple, expert advice to 20M readers a month offers a section on Hepatitis “full of easy to digest explanations, clinical information, treatment resources and even strategies for living with hepatitis.”
Information That May Be Useful To Patients and Families On Wait Lists and Post-Transplant
“Counseling & Support.” Information and resources provided for Caregivers by Memorial Sloan-Kettering Cancer Center.
When Health Insurance Is Not Enough from The Healthwell Foundation, which may be able to “assist patients living with chronic and life-altering illnesses in paying their share of prescription drug copayments, deductibles, and health insurance premiums.”
“Support Services.” The American Liver Foundation provides information about liver disease, resources and emotional support to patients, family members and caregivers.
Transplant Living – A project of the United Network for Organ Sharing (UNOS), providing guidance for before and after a transplant, the process of donation, and links to events and support groups around the country.
Astellas Pharmaceuticals provides information and tools to help potential heart, kidney and liver transplant patients prepare for what’s ahead (pre-transplant, the first year, and beyond) on their “Welcome to Transplant Experience” website.
The American Transplant Association, Inc. (ATA) – dedicated to providing patient-oriented education and services to those affected by and interested in organ transplantation. Established to share its knowledge and experience with transplant patients nationwide. Focuses on bringing a patient’s perspective to the education, services and support that transplant patients and their families need.
Transplant Families – A blog written and curated by a mother for the pediatric transplant community. The author states her “goal is to connect you to unbiased, objective information that respects the amazing organizations, medical personnel and other staff already in the news and connect you with other transplant families that will help you in your journey.” Providing opportunities for readers to share information and concerns.
Transplantation In The News
11-7-17 “My husband was admitted to the hospital in November 2010 with acute liver failure caused by alcohol use disorder. Mark’s doctor said he needed a liver transplant, but that they “wouldn’t even look at him” until he was alcohol-free for six months. His doctors also refused to assess me as a living donor. “Alcoholics just drink again and waste the organ,” I was told. At the time, I believed it.
Mark lived for just 16 days more.”
From STAT: Read the full story – A Widow’s Fight to Change a Discriminatory Liver Transplant Policy.
Can you believe that most U.S. Adults cannot donate a kidney due to preventable health conditions and potential loss of income. Read this article in Medical News Today, November 2014 and keep yourself healthy.
In the Summer of 2013, changes were made to the policy governing distribution of organs from deceased donors. The goal was to assure that organs went to the most ill, the most vulnerable, patients and to eliminate or decrease geographic odds of getting an organ. The change is referred to as “Share 35.”
2-28-14 From the NorthJerseyNews.com – Three-week-old Luciano is the fourth life made possible by one heart donation.
3-11-14 An amazing transplant story. We are ever so grateful to those who choose to donate their organs and save lives….!!!!
Don’t take your organs to Heaven. Heaven knows we need them here. Tell your family of your intention to be an organ and tissue donor. Go to this site to register in your state now.
We welcome you to recommend additional links on organ transplantation that you have found accurate and useful.
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