Internet Resources for Transplant Patients and Live Organ Donors
UW Health
http://www.uwhealth.org/transplant/- Information about the UW Transplant program as well as online patient education videos.
UNOS (United Network of Organ Sharing)
www.unos.org- In Patients, find answers to questions along with people profiles.
- The Transplant Patient Database contains center-specific waiting list and transplant data.
Transplant Recipients International Organization, Inc.
- Transplantation/organ donation information for patients, donors and families.
Living Donors Online!
www.livingdonorsonline.org- Specific information for those considering living organ donation, both kidney and liver. Includes question and answer, process, and stories.
American Society of Transplantation
http://www.a-s-t.org/- An international organization of transplant professionals dedicated to advancing the field of transplantation through the promotion of research, education, advocacy, and organ donation to improve patient care.
American Society of Transplant Surgeons (ASTS)
http://www.asts.org/ResearchEducation/PatientEducation.aspx- Information and online videos for patients in need of transplant and for those considering living donation.
Healthy Transplant
http://www.healthytransplant.com/- A web site developed to help patients learn about transplant so they can take a more active role in their cares.
Organ Transplant Support
- A non-profit organization that aims to provide support and comfort to transplant patients and their families as they experience the trials of an organ transplant, to give support to future transplant recipients and to promote donor awareness.
Transplant Buddies
www.transplantbuddies.org- A discussion and bulletin board site for recipients and donors.
Transplant Living
http://www.transplantliving.org/- 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 Wisconsin
http://www.transplantwisconsin.com/- Transplant Wisconsin provides organ transplant recipients, donors, families, friends, and interested persons a forum for exploration, education and support.
TransWeb
www.transweb.org- A non-profit serving the world transplant community, aimed at young people.
- The Transplant Journey, a multimedia trip through the transplant process.
- List of support groups by state:
Kidney Disease-Specific Sites
American Association of Kidney Patients
- Non-profit that helps patients to learn more and become active participants in planning/managing treatment. Focus on rehabilitation, lobbying, and emotional support.
Hereditary Nephritis Foundation
www.cc.utah.edu/~cla6202/HNF.htm
Hypertension Dialysis and Clinical Nephrology (HDCN): Renal Disease Electronic Journal
www.hdcn.com- Articles on clinical nephrology and dialysis issues, published on-line.
Ikidney.com
www.ikidney.com- Worldwide resource for kidney patients and professionals.
Interstitial Cystitis Association
www.ichelp.com
Kidney Cancer
www.oncolink.org- This site also has information in Spanish about kidney cancer.
National Institute of Diabetes, Digestive and Kidney Disorders
www.niddk.nih.gov
National Kidney Foundation
www.kidney.org- Comprehensive information on the many forms of kidney disease, organ donation and transplantation.
Polycystic Kidney Research Foundation
www.pkdcure.org
Renalnet
Urological Sciences Research Foundation
www.usrf.org- USRF is a non-profit group which studies the major urological diseases.
The Whole World of Nephrology
www.nephroworld.com
Liver Disease-Specific Sites
American Liver Foundation
www.liverfoundation.org
Pediatric Liver Disease
www.childliverdisease.org
Liver disease information site
http://cpmcnet.columbia.edu/dept/gi/disliv.html- This resource, designed by Columbia University, is a list of liver diseases and conditions with links to sites that provide relevant information.
Children’s Liver Association for Support Services
www.classkids.org- Non-profit group which serves the emotional, educational, and financial needs of families coping with childhood liver disease and transplantation.
Other health sites that may be of interest
American Diabetes Association
www.diabetes.org- This site has information about diabetes in English and Spanish
Centers for Disease Control (CDC)
www.cdc.gov
Medline
www.nlm.nih.gov- The world’s most extensive collection of published medical information; coordinated by the National Library of Medicine.
Healthfinder
www.healthfinder.gov- A gateway site to help consumers find health and human services information quickly.
National Institutes of Health Information Page
http://health.nih.gov
Restless Legs Syndrome Foundation
www.rls.org
Fund-raising sites
Children’s Organ Transplant Association
www.cota.org- Non-profit that provides fund-raising assistance for children needing transplant.
National Transplant Assistance Fund, 1-800-642-8399
www.transplantfund.org- Non-profit that provides fund-raising expertise for patients, $1,000 challenge grants for eligible patients, and educational information.
If you have questions about planning for surgery and recovery, please contact the social workers or your coordinator at the Transplant Clinic Office at (608) 263-1384.
The information here is provided to help patients seek general information and resources. This list is not all-inclusive and is subject to change. Information and advice that is found in any of these resources are not intended to be used in place of professional medical advice. Ask your doctor before acting on any advice to be sure that it is right for you.
The information provided should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions. Call 911 for all medical emergencies. Any duplication or distribution of the information contained herein is strictly prohibited.
Last Updated: 09/10/2008
Copyright © 09/10/2008 University of Wisconsin Hospitals and Clinics Authority. All rights reserved. Produced by the Department of Nursing. UWH #5757
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