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Solid Organ Resource Guide

                                                                        Solid Organ Resource Guide: Version 7.0

INTERLINK’s medical team compiled the table below of transplant related agencies, vendors and support programs that can be contacted by internet or telephone.  Some of the agencies and programs provide very specific information which may be useful during the transplant process, and it is our hope this list will lead you to the precise information you need.   This list is not necessarily complete and INTERLINK does not endorse any of the organizations and is providing this information in a non-biased manner.  You should evaluate sources of information carefully before making important decisions.  As always, the most patient specific source of information about your potential transplant will be provided to you from the transplant center(s) your candidate or insured is considering.

The single best publicly available resource for learning about solid organ transplantation has been prepared by the United Network for Organ Sharing (UNOS) and can be found here. We strongly recommend that you refer to this resource and to the website of the transplant center or centers that your candidate/insured is considering.  The transplant center websites frequently contain the most up-to-date list of housing options and other current information that will be of importance to you.

Web Links & Phone Numbers

General Information


American Center for Transplant Resources

(919) 932-7845

American Organ Transplant Association

American Society for Histocompatibility & Immunogenetics

American Society of Transplantation

American Society of Transplant Surgeons

Coalition on Donation

Children’s Organ Transplant Association (COTA)

International Transplant Nurses Society

National Associations of Hospital Hospitality Houses


Medicare Hotline

(800) 638-6833

National Insurance Consumer Hotline

(800) 942-4242

National Organization of Social Security Claimants' Representatives or (888) 431-2804

National Organization for Rare Disorders

North American Transplant Coordinators Organization (NATCO)

The Organ Procurement and Transplant Network (OPTN)

Transplant Living

Transplant Recipients International Organization, Incorporated (TRIO)

TRICARE or (303) 676-3526

United Network for Organ Sharing (UNOS)

Heart and Lung Transplant


American Heart Association

American Thoracic Society

International Society for Heart and Lung Transplantation (ISHLT)

Second Wind Lung Transplant Association, Inc.

Kidney Transplant


American Kidney Fund

American Association of Kidney Patients

American Society of Nephrology

American Urological Association

Forum of ESRD Networks

National Kidney Foundation

Liver Transplant


American Association for the Study of Liver Diseases

American Liver Foundation

or 1-800-465-4837

Center for Liver Diseases

(305) 547-5787

Children's Liver Association for Support Services (CLASS)

Hepatitis Foundation International

Pancreas, Kidney/Pancreas and Islet Cell Transplant


American Diabetes Association

Clinical Islet Transplantation Consortium

Juvenile Diabetes Foundation International

(212) 785-9500 or (800) 533-2873

Financial Assistance/Information


National Foundation for Transplants

or 1-800-489-3863

National Transplant Assistance Fund

or 1-800-642-8399

Patient Advocate Foundation

Drug Assistance


Abbott Patient Assistance Program (Gengraf)

(800) 633-9110

Fujisawa Patient Assistance Program (Prograf)

(800) 477-6472

Needy Meds

Novartis Patient Assistance Program (Cyclosporine)

(888) 455-6655

Pharmaceutical Research and Manufacturers of America

Roche Patient Assistance Program (Cellcept)

(800) 772-5790

The Medicine Program



Air Care Alliance

Air Charity Network

Corporate Angel Network

National Patient Travel Center

Support Organizations


Family Caregiver Alliance

Family Voices

Friends Health Connection

National Alliance for Caregiving

National Family Caregivers Association

National Respite Locator Service

Rosalyn Carter Institute

Starlight Children’s Foundation

The Empowered Patient Coalition