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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

www.aotaonline.org

American Society for Histocompatibility & Immunogenetics

www.ashi-hla.org/

American Society of Transplantation

https://www.myast.org/

American Society of Transplant Surgeons

www.asts.org

Coalition on Donation

www.donatelife.net

Children’s Organ Transplant Association (COTA)

www.cota.org/

International Transplant Nurses Society

www.itns.org

National Associations of Hospital Hospitality Houses

www.nahhh.org

Medicare

www.cms.gov

Medicare Hotline

(800) 638-6833

National Insurance Consumer Hotline

(800) 942-4242

National Organization of Social Security Claimants' Representatives

www.nosscr.org or (888) 431-2804

National Organization for Rare Disorders

www.rarediseases.org

North American Transplant Coordinators Organization (NATCO)

www.natco1.org

The Organ Procurement and Transplant Network (OPTN)

https://optn.transplant.hrsa.gov/

Transplant Living

www.transplantliving.org

Transplant Recipients International Organization, Incorporated (TRIO)

http://www.trioweb.org/

TRICARE

http://www.tricare.mil/ or (303) 676-3526

United Network for Organ Sharing (UNOS)

www.unos.org

Heart and Lung Transplant

 

American Heart Association

www.americanheart.org/presenter.jhtml?identifier=4588

American Thoracic Society

www.thoracic.org

International Society for Heart and Lung Transplantation (ISHLT)

www.ishlt.org

Second Wind Lung Transplant Association, Inc.

www.2ndwind.org

Kidney Transplant

 

American Kidney Fund

www.akfinc.org

American Association of Kidney Patients

https://www.aakp.org/

American Society of Nephrology

www.asn-online.org

American Urological Association

www.auanet.org

Forum of ESRD Networks

www.esrdnetworks.org

National Kidney Foundation

www.kidney.org/transplantation/

Liver Transplant

 

American Association for the Study of Liver Diseases

www.aasld.org

American Liver Foundation

www.liverfoundation.org/education

or 1-800-465-4837

Center for Liver Diseases

(305) 547-5787

Children's Liver Association for Support Services (CLASS)

www.classkids.org/

Hepatitis Foundation International

www.hepfi.org

Pancreas, Kidney/Pancreas and Islet Cell Transplant

 

American Diabetes Association

www.diabetes.org

Clinical Islet Transplantation Consortium

www.citisletstudy.org

Juvenile Diabetes Foundation International

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

Financial Assistance/Information

 

National Foundation for Transplants

www.transplants.org

or 1-800-489-3863

National Transplant Assistance Fund

www.transplantfund.org

or 1-800-642-8399

Patient Advocate Foundation

www.patientadvocate.org

Drug Assistance

 

Abbott Patient Assistance Program (Gengraf)

(800) 633-9110

Fujisawa Patient Assistance Program (Prograf)

(800) 477-6472

Needy Meds

www.needymeds.com

Novartis Patient Assistance Program (Cyclosporine)

(888) 455-6655

Pharmaceutical Research and Manufacturers of America

www.phrma.org

Roche Patient Assistance Program (Cellcept)

(800) 772-5790

The Medicine Program

www.themedicineprogram.com

Transportation

 

Air Care Alliance

www.aircareall.org

Air Charity Network

www.aircharitynetwork.org

Corporate Angel Network

www.corpangelnetwork.org

National Patient Travel Center

www.patienttravel.org

Support Organizations

 

Family Caregiver Alliance

www.caregiver.org

Family Voices

www.familyvoices.org

Friends Health Connection

www.friendshealthconnection.org

National Alliance for Caregiving

www.caregiving.org

National Family Caregivers Association

www.nfcacares.org

National Respite Locator Service

www.respitelocator.org

Rosalyn Carter Institute

www.rci.gsw.edu

Starlight Children’s Foundation

www.starlight.org

The Empowered Patient Coalition

http://empoweredpatientcoalition.org/