| General Topics of Interest | Organ-Specific Sites |
| GENERAL - ALL ORGANS | KIDNEY |
| LIVING DONATION | PANCREAS |
| FINANCIAL ASSISTANCE | LIVER |
| CLINICAL AND ACADEMIC LINKS | HEART |
| LUNG |
Links to Transplant and
Related Organizations
General — All Organs
United Network for Organ Sharing (UNOS)
PO Box 2484
Richmond, VA 23218
1-888-894-6361
UNOS brings together medicine, science, public policy and technology to facilitate every organ transplant performed in the United States. UNOS assists transplant doctors, patients, and members of the public by helping to ensure that organs are procured and distributed in a fair and timely manner.
US Transplant -- Scientific Registry of Transplant Recipients (SRTR)
c/o URREA
315 W Huron, Suite 260
Ann Arbor, MI 48103 USA
1-734-665-4108
The SRTR supports the ongoing evaluation of the scientific and clinical status of solid organ transplantation in the United States. It is administered by the University Renal Research and Education Association (URREA) with the University of Michigan.
The SRTR supports ongoing evaluation of the scientific and clinical status of solid organ transplantation including kidney, pancreas, liver, intestine, heart, lung, and heart-lung.
Transplant Living
700 North 4th Street
Richmond, Virginia 23219
1-888-894-6361
Transplant Living is an educational web site produced by the United Network for Organ Sharing (UNOS). The site provides extensive information and lists of resources concerning the course of care for transplant patients, financial challenges, social issues, and covers various medical questions about the transplantation process.
Transplant Experience
Astellas Pharma US Inc.
3 Parkway North
Deerfield, IL 60015
1-800-695-4321
Transplant Experience, a web site and educational program sponsored by Astellas Pharma US Inc. (manufacturer of Prograff, a major immunosuppressive agent) offers information about the transplant process, healthy living, personal experiences and covers a wide diversity of important topics relevant to transplant patients.
American Transplant Association
980 North Michigan Avenue, Suite 1400
Chicago, IL 60611
1-800-494-4527
A nonprofit organization that provides educational services and support for transplant recipients and their families.
American Society of Transplantation
15000 Commerce Parkway, Suite C Mt. Laurel, NJ 08054 856-439-9986
www.a-s-t.orgA society dedicated to research, education, advocacy, and patient education and care in transplantation whose goal is to offer a forum for the dissemination of knowledge, scientific information, and expertise in the field of transplantation.
The National Council on Minority Education in Transplantation (COMET)
P.O. Box 7401
Freeport, NY 11520
COMET's mission is to increase the awareness of the minority community to organ and tissue donation, to serve as the conscience of the transplant process, and to enhance the quality of life in the minority community, as a result of their participation and increased awareness of the transplant system and its benefits to the community.
Transplant Recipients International Organization, Inc.
2100 M Street, NW, #170-35
3 Washington, DC 20037-1233
1-800-TRIO-386
TRIO is an international organization providing donation awareness and support, advocacy, and education for transplant recipients, their families and friends. TRIO is structured as an association of member chapters. Within each chapter, individuals who have undergone transplant surgery provide support for other transplant candidates, recipients, their families and donor family members. The TRIO chapter closest to the central Virginia area is the National Capital Chapter of TRIO.
TransWeb
The Northern Brewery
1327 Jones Drive, Suite 201
Ann Arbor, MI 48105
734-998-7314
TransWeb is a nonprofit educational resource serving the world transplant community. TransWeb features news and events, real people's experiences, the top 10 myths about donation, a donation quiz, and a reference area.
Organ Transplant List Serv
www.faqs.org/faqs/medicine/transplant-faq/part1/A discussion list for organ transplant recipients and anyone else interested in the issues, experiences, and realities of living with an organ transplant.
LifeNet
5809 Ward Court
Virginia Beach, VA 23455
1-800-847-7831
LifeNet is the largest full-service, nonprofit allograft tissue bank in the United States. This site provides information and helpful resources to donor families, recipients, and healthcare professionals.
Clinical/Academic Information
American Society of Transplantation
15000 Commerce Parkway
Suite C
Mt.Laurel, NJ,08054
1-856-439-9986
The American Society of Transplantation (AST) was founded in 1982 and is an organization of more than 2,500 transplant professionals dedicated to research, education, advocacy and patient care in transplantation. A highlight of the web site is a collection of on-line brochures developed expressly for patients.
American Society of Multicultural Health and Transplant Professionals
12 River Bend Place
Jackson, MS 39232
1-866-276-4871
ASMHTP is a society promoting organ and tissue donation and transplantation among minorities. It serves in a national advisory capacity for research and education.
The National Institute of Allergy and Infectious Diseases (NIAID)
6610 Rockledge Drive, MSC 6612
Bethesda, MD 20892-6612
1-301-496-5717
NIAID, part of the National Institutes of Health, takes a comprehensive approach to the biological obstacles confronting transplantation. Thier publications and news releases are listed at this site.
Financial Assistance
National Foundation for Transplants
1102 Brookfield Road, Suite 200
Memphis, TN 38119
1-800-489-3863
This national, nonprofit organization offers a program of healthcare and financial support services and patient advocacy for transplant candidates, recipients, and their families.
Since 1983, patients facing financial major financial barriers on their journey to transplantation have found help through National Foundation for Transplants (NFT). NFT serves bone marrow and solid organ (kidney, liver and pancreas) transplant patients. NFT provides advocacy, support and financial assistance to transplant candidates and recipients when they face major transplant-related costs not covered by insurance.
National Transplant Assistance Fund (NTAF)
3475 West Chester Pike, Suite 230
Newtown Square, PA 19073
800-642-8399
Anyone who anticipates uninsured medical expenses such as relocation or medications related to transplantation should consider fundraising to help offset those expenses. NTAF helps patients organize, launch and sustain successful fundraising campaigns based on the kind of support network and special events available in their home communities. In addition to step by step guidance, NTAF offers a personal page for each patient on the NTAF website, guidance in dealing with the media and free resources.
Children's Organ Transplant Association, Inc.
2501 COTA Drive
Bloomington, IN 47403
1-800-366-2682
The Children's Organ Transplant Association provides fundraising assistance for children and young adults needing life-saving transplants and promotes organ, marrow and tissue donation.
Angel Flight America
1-877-858-7788
www.angelflightamerica.org/
Angel Flight America, an organization of more than 5,000 pilots and other volunteers, is dedicated to serving U.S. communities by providing free air transportation on private aircraft to financially and medically needy people who cannot access or afford regular commercial transportation to health care.
Air Care Alliance
1515 East 71st Street, Suite 312
Tulsa, OK 74136
1-888-260-7937
The Air Care Alliance is a nationwide league of nonprofit flying organizations whose volunteer pilots are dedicated to community service. Volunteers perform public-benefit flying for many needs including patient transport.
Donation
OrganDonor.gov
HRSA Information Center
P.O. Box 2910
Merrifield, VA 22116
1-888-275-4772
The official U.S. Government web site for organ and tissue donation and transplantation, www.organdonor.gov, is maintained by the Health Resources and Services Administration (HRSA), Healthcare Systems Bureau (HSB), Division of Transplantation, an agency of the U.S. Department of Health and Human.
The Organ Procurement and Transplantation Network (OPTN)
700 North 4th Street
Richmond, VA 23219
1-888-TX-INFO-1
The OPTN is the unified transplant network established by the United States Congress under the National Organ Transplant Act (NOTA) of 1984. The act called for the network to be operated by a private, non-profit organization under federal contract.
The OPTN is a unique public-private partnership that links all of the professionals involved in the donation and transplantation system. The primary goals of the OPTN are to:
- increase the supply of donated organs available for transplantation
- increase the effectiveness and efficiency of organ sharing and equity in the national system of organ allocation
The United Network for Organ Sharing (UNOS), based in Richmond, Virginia, administers the OPTN under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.
TransWeb
The Northern Brewery
1327 Jones Drive, Suite 201
Ann Arbor, MI 48105
734-998-7314
TransWeb is a nonprofit educational resource serving the world transplant community and based at the University of Michigan. TransWeb features news and events, real people's experiences, the top 10 myths about donation, a donation quiz, and a reference area.
The Partnership for Organ Donation
2 Oliver Street
Boston, MA 02109
617-482-5746
The Partnership for Organ Donation is an independent, nonprofit organization, dedicated to improving the donation process by creating programs to educate, lead, and motivate health professionals and the public. The Partnership for Organ Donation believes that the effectiveness of the donation process can be significantly improved and that public support for donation can be converted into action. The Partnership aims to accomplish its mission by ensuring that every eligible family is offered donation through a systematic and sensitive process, and that families make choices about donation and communicate them in advance of a crisis.
Coalition on Donation
700 North Fourth Street
Richmond, VA 23219
804-782-4920
The Coalition on Donation is a not-for-profit alliance dedicated, in collaboration with the United Network for Organ Sharing (UNOS), to educating the public about organ and tissue donation and creating a greater willingness to donate.
LifeLink Foundation
409 Bayshore Boulevard
Tampa, FL 33606
800-262-5775
813-253-2640
LifeLink Foundation is a nonprofit community service organization dedicated to the recovery of an increasing number of high-quality organs and tissues for transplant therapy. The Foundation attempts to work sensitively, diligently, and compassionately with donor families to facilitate the donation of desperately needed organs and tissues for waiting patients.
The Living Bank
P.O. Box 6725
Houston, TX 77265-6725
1-800-528-2971
A nonprofit organ-donor education organization dedicated to the enhancement of organ and tissue donation and transplantation. Living Bank maintains an organ donor registry that keeps computerized records of organ donor data for future retrieval in an emergency.
Kidney Transplantation
American Association of Kidney Patients (AAKP)
3505 East Frontage Road, Suite 315
Tampa, FL 33607-1796
1-800-749-2257
AAKP is a voluntary patient organization that has been dedicated to helping renal patients and their families deal with the physical, emotional, and social impact of kidney disease for more than 30 years. The programs offered by AAKP inform and inspire patients and their families to better understand their condition, adjust more readily to their circumstances, and assume more normal, productive lives in their communities.
National Kidney Foundation
30 East 33rd Street
New York, NY 10016
1-800-622-9010
The National Kidney Foundation, Inc. is a major voluntary health organization, seeking to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. The web site includes useful and authoritative patient information on a wide variety of topics relevant to transplantation.
Forum of End Stage Renal Disease (ESRD) Networks
1527 Huguenot Road
Midlothian, VA 23113
804-794-2586
A collaboration of individual ERSD groups with support and advocate benefits to improve the quality of care to people with renal disease.
Pancreas Transplantation
The National Pancreas Foundation
364 Boylston Street, 4th Floor
Boston, MA 02116
1-866-726-2737
The mission of the National Pancreas Foundation is to support the research of diseases of the pancreas and to provide information and humanitarian services to those people who are suffering from such illnesses.
Liver Transplantation
American Liver Foundation (ALF)
75 Maiden Lane, Site 603
New York, NY 10038
1-800-465-4837
A nonprofit organization promoting liver health and disease prevention. ALF provides research, education and advocacy for those affected by hepatitis and other liver-related diseases.
Hepatitis Foundation International
504 Blick Drive
Silver Spring, MD 20904-2901
800-891-0707
A foundation dedicated to education, awareness, prevention and research support of viral hepatitis for the public, patients, educators, and medical professionals.
Heart Transplantation
International Society for Heart and Lung Transplantation (ISHLT)
14673 Midway Road, Suite 200
Addison, Texas 75001
972-490-9495
The International Society for Heart and Lung Transplantation (ISHLT) is a not-for-profit organization dedicated to the advancement of the science and treatment of end-stage heart and lung diseases.
American Heart Association
National Center
7272 Greenville Avenue
Dallas, TX 75231
1-800-242-8721
The American Heart Association is a national voluntary health agency whose mission is to reduce disability and death from cardiovascular diseases and stroke. The site includes a very wide array of information on heart health and diseases (including stroke).
WebMD, Inc.
111 8th Ave
7th Floor
New York, NY 10011
212) 624-3700
WebMD is a corporate provider of health information and services to consumers and healthcare professionals. WebMD is a product of Emdeon Corp.
TheHeart.org
WebMD
390 Guy St, Suite 109,Montreal, QC Canada H3J 1S6
1-514-931-5434www.theheart.org/
TheHeart.com is a web site oowned and operated by WebMD (see below). The site provides information for cardiologists, allied healthcare professionals (such as nurses and lab technicians), and referring physicians.
Thoratec Corporation
6035 Stoneridge Drive
Pleasanton, CA 94588
1-925-847-8600
A useful and thorough review of patient information related to ventricular assist devices (VAD) is found at the website for Thoratec Corporation, manufacturer of the HeartMate VAD.
Lung Transplantation
Second Wind
3440 Halliday Avenue
St. Louis, MO 63118
1-888-855-9463
Second Wind Lung Transplant Association, Inc. was formed on April 17, 1995, by a small group of people who wanted to provide information about lung transplantation to others. Today, Second Wind is an international organization with over 400 members scattered throughout the United States and in Australia, South Africa, the United Kingdom, and Germany.
Alpha-1 Association
275 West Street, Suite 210
Annapolis, Maryland 21401
1-800-521-3025
The Alpha 1 National Association is a member-based nonprofit organization founded in 1991 to identify those affected by Alpha-1 Antitrypsin Deficiency (Alpha-1) and to improve the quality of their lives through support, education, advocacy, and research. The Association has over 60 volunteer-led support groups around the US which are supported through annual grass roots grants.
The Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, Maryland 20814
1-800-344-4823
The mission of the Cystic Fibrosis Foundation --a donor-supported, nonprofit organization--is to assure the development of the means to cure and control cystic fibrosis (CF) and to improve the quality of life for those with the disease.
PHCentral
1309 12th Ave.
San Francisco, CA 94122
www.phcentral.org/
PH Central is an internet resource for Pulmonary Arterial Hypertension (PAH), providing information and support for patients, caregivers and medical professionals.
LAM Foundation
10105 Beacon Hills Drive,
Cincinnati, Ohio 45241
1-513-777-6889
The LAM Foundation provides support, education, and hope to women with Lymphangioleiomyomatosis (LAM), a progressive, debilitating lung disease. The goals of the foundation are to organize, marshal the forces of the scientific community, raise LAM from obscurity, and conquer it in a decade.
International Society for Heart and Lung Transplantation (ISHLT)
14673 Midway Road, Suite 200
Addison, Texas 75001
972-490-9495
The International Society for Heart and Lung Transplantation (ISHLT) is a not-for-profit organization dedicated to the advancement of the science and treatment of end-stage heart and lung diseases.