Resources for the Transplant Journey
You can find a massive web of transplant information on the internet. This list of sites represent only a sample of what can be found. Some of these listings can be helpful in identifying further reliable sites you may want to check.
Although some sites may have a focus on one particular organ, often they provide information on other organs as well. Do not think that just because a site is directed at one organ group it is not of value to you. Check it out because you might be surprised to find some information that applies to you.
You’ll need to be a smart web researcher! Unfortunately, some web sites are not reliable and you cannot believe what you read there. Be careful to check how medically correct sites are and how old the information is. Examine what you see and compare it to the sites that have a medical orientation. Find out who is sponsoring the site. Check the dates they were updated. Look for conflicts of interest or advertising biases on some sites. Chat rooms and listservs on transplant can be especially problematic. Rumors and false information can lead you off track.
It is important to check what you are reading on the web with your medical team. Do your research, but ask them questions to confirm that you understand what you are reading and are not drawing the wrong conclusion.
The team appreciates knowledgeable patients and caregivers. Double check what you find out with them.
Note: The Johns Hopkins Transplant Center is not responsible for the accuracy of these sites and their listing here does not connote an endorsement of their contents.
Selected Transplant-Related Web Sites
American Association for the Study of Liver Diseases
http://www.aasld.org
Targeted to those who study the liver, the site offers technical papers on liver diseases and treatment, publications, news of the organization and links to other sites. A search engine makes it easy to find specific technical information. A Drug Alert page is especially useful for those trying to find out the latest warnings from the Food and Drug Administration.
American Association of Kidney Patients
http://www.aakp.org
Aimed toward supporting patients, the site offers practical and informative information on the diseases of the kidney, local programs, news and updates, policy issues, an electronic newsletter, and information on an annual convention.
American Heart Association:
http://www.americanheart.org
The American Heart Association aims to reduce disability and death from cardiovascular diseases and stroke. The web site offers a wealth of information for heart patients and includes a very basic grounding in heart transplantation.
American Liver Foundation
http://www.liverfoundation.org
Aimed primarily at medical professionals, the site also offers liver health news as well as some advocacy and information on local chapters.
American Lung Association
http://www.lungusa.org
A comprehensive, basic site for lung patients including children, these offerings are not focused upon transplant, yet there is much to learn here about living with lung diseases.
American Society of Nephrology
http://www.asn-online.org
Aimed at medical professionals, the site offers newsletters, facts, and access to technical papers. It also offers information on grants and funding, statistics, and issues of policy and public affairs.
CenterSpan
http://www.centerspan.org
The American Society of Transplant Surgeons offers a technical site aimed at professionals and it focuses on new developments, discussion, and access to literature.
Coalition on Donation
http://www.shareyourlife.org
A coalition of groups that promote organ donation offers promotional ideas, a shop, directions on how to become a donor, facts on donation, and links to regional groups.
Diabetes Research Institute
http://www.drinet.org
The Diabetes Research Institute of the University of Miami aims to support research so that “promising discoveries can move from the lab to the patient as quickly as possible.” Offered are lists of clinical trials, news, a kid zone, and descriptions of the research that is ongoing through this organization.
Dietary Supplements, Center for Food Safety and Nutrition
www.cfsan.fda.gov/%7Edms/ds-warn.html
This government site of the Food and Drug Administration offers alerts and safety information on dietary supplements that can be important to transplant patients because of drug interactions. There is an abundance of general information on supplements and warnings for the public.
Division of Digestive and Liver Diseases, Columbia University Gastroenterology
http://cpmcnet.columbia.edu/dept/gi/elsewhere.html
A wealth of reliable web listings on gastroenterology, liver diseases, and nutrition are on this large site, as well as organizations and other internet resources in the field.
Division of Transplantation, Health Resources and Services Administration
http://www.hrsa.gov/osp/dot/dotmain.htm
The division provides federal oversight and support for the organ procurement, allocation, and transplantation system. The site offers legislative and regulatory information, has a public and professional education branch for donor issues, and an operations and analysis branch for solid organ transplants, among other topics.
Electric Heart
http://www.pbs.org/wgbh/nova/eheart
The popular Public Broadcasting System program NOVA offers this site that features a map of the human heart, heart facts, information on surgical pioneers, artificial hearts, resources, and a transcript of the 1999 program on “The Electric Heart.” The information is good, basic and easy to understand.
Family Caregiver Alliance
http://www.caregiver.org
The site presents information, education, a list of services, advocacy activities, public policy activities, information on Medicare, research on care giving, tips on coping, and descriptions of family leave laws. Spanish and Chinese language options are available.
The Health Library at Stanford
http://healthlibrary.stanford.edu/index.html
This massive site offers a wealth of links to other scientifically based sites. Topics include links to medication sites, drug information and therapies, clinical trials, organ transplants, immunosuppression and the immune system, diseases and disorders, references, access to medical journals and related information. This site is a must for patients.
Home for Living Donors Online
http://www.kidney.org/recips/livingdonors
The site is a good start as an introduction to living donation. It offers Q&A about living kidney, liver, and lung donation, a live chat opportunity, and general information on and promotion of living donation.
Hypertension, Dialysis and Clinical Nephrology
http://www.hdcn.com
Directed to medical professionals, the weekly periodical’s site offers technical news and scholarly information on a variety of kidney issues.
Insulin-Free World
http://www.insulin-free.org
The foundation that runs this site provides a comprehensive resource on technologies and research regarding diabetes. Information on pancreas transplants, islet research, immunology, devices, politics-society-economics, are on the site, which also includes a search engine.
The Journal of Immunology
http://www.jimmunol.org
Aimed at physicians, researchers, and others in the medical community, the site reflects the periodical’s contents. The current issue is posted as well as a preview of future issues. The site is sponsored by the American Association of Immunologists. A search engine in on the site.
Kidney Directions
http://www.kidneydirections.com/us/eng.htm
Sponsored by Baxter Healthcare Corporation, the site offers a Spanish version. It covers support information for family and patients, and a kid’s page. It can serve as a resource for basic information on causes, symptoms, tests and ideas on how to stay healthy. E-Mailings are offered that can be customized to a patient’s interests.
Manual of Lung Transplant Medical Care
http://www.medscape.com/viewpublication/262_about
Written by the University of Minnesota Physicians Transplant Program and Fairview Health Services, the manual is an essential reference for referring and primary care physicians. It outlines the optimal procedures to follow in the care of the lung transplant recipient beginning prior to the time of first referral and continuing through the rest of the recipient's postoperative life.
Medical Matrix
http://www.medmatrix.org/reg/login.asp
The site offers “Ranked, Peer-Reviewed, Annotated, Updated Clinical Medicine Resources.” Requires a login and a subscription fee. The site lists over 6,000 medical web sites, linking to over 1.5 million documents. It is designed for the medical professional.
The Medicine Program
http://www.themedicineprogram.com
Aims to help patients who cannot afford medication through a nationwide listing of groups offering assistance.
National Alliance for Caregiving
http://www.caregiving.org
This site is another must visit for caregivers. It offers tips, web links, titles of relevant books, and related resources.
National Family Caregivers Association
http://www.nfcacares.org
The group aims to educate, empower, and speak primarily on public policy issues that relate to care giving. Also offers care giving tips and news within the field.
National Heart, Lung, and Blood Institute
http://www.nhlbi.nih.gov
Presents information for patients, health professionals, and researchers. Specifically, the site ranges from technical to consumer information, clinical trials, health education, practice guidelines, research at NHLBI and news releases. A Diseases and Conditions Index is included.
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
http://www.niddk.nih.gov
Sponsored by the National Institutes of Health, the site includes clinical trial sites, research, health information, a link to the Liver Branch, descriptions of ongoing research, reports, testimony, and plans for the future of the branch.
National Institutes of Health, Medline: Encyclopedia for lab tests and drug information
http://www.nlm.nih.gov/medlineplus/encyclopedia.html
and
http://www.nlm.nih.gov/medlineplus/druginformation.html
The National Institutes of Health offers these web sites that are exceptionally useful because they provide a comprehensive list of laboratory tests and a description of what is being probed and what results tell physicians. The medication site presents side effects, drug interactions, instructions for taking meds, and related information. Both sites will be important to transplant patients who want to understand better these two important aspects of the transplant journey.
National Kidney Foundation
http://www.kidney.org
Just about everything you need to know about kidney diseases and treatment is on this site: clinical practices guidelines, patient education, organ and tissue donors and recipients, news and information, affiliates, and the opportunity to receive the E-Kidney newsletter.
National Minority Organ Tissue Transplant Education Program
http://www.mottep.org
The non-scientific site offers a Spanish language option, statistics, prevention tips, donation FAQ, news and related information of interest to minority patients. It aims to educate minorities about transplant and to increase minority donations and participation in this issue. Links to local chapters are offered.
National Transplant Assistance Fund
http://www.transplantfund.org
Offering to help raise funds for transplant, the organization provides expertise, information on tissue and organ donation, links to other sites, a newsletter, and various kinds of technical support.
Organ Procurement and Transplant Network
http://www.optn.org
The group maintains the only national patient waiting list and features the most comprehensive data available in any single field of medicine. On this site you can acquire information on the national transplant situation as well as information and data by organ for specific transplant centers in this country. This would include information on the length of waiting lists, wait times, outcomes, and related information.
Patient’s Guide to Liver Transplant Surgery
http://www.surgery.usc.edu/divisions/hep/patientguide
This University of Southern California guide walks the patient through the complete process of transplantation in language that is easy to understand. It covers, medications, before, during and after surgery, and the organ donation process.
PhRMA: Helping Patients
http://helpingpatients.org
Offers information and services on Patient Assistance Programs from 48 pharmaceutical companies that aid patients with the cost of drugs. The site can be searched by name of pharmaceutical company to determine what the manufacturer’s assistance program involves.
Renalnet Kidney Information Clearinghouse
http://www.renalnet.org
An international site, the offerings include an excellent resource list of kidney sites and transplant sites for the professional and the patient. There are online discussion forums and a dialysis unit search tool, among other items.
Renal World
http://www.renalworld.com
An international site, this page offers various language options to review information on nephrology. The Transplant Resources section presents news of transplant programs in many countries, links to transplant facilities, links to health organizations, and dialysis information internationally.
Second Wind
http://www.2ndwind.org/main.htm
The Second Wind Lung Transplant Association offers caregiver links, description of diseases, financing information, info sheets, list of local chapters, a nutrition center, a list of pulmonary definitions, and a list of Medicare approved lung transplant centers.
Today’s Caregiver
http://www.caregiver.com
This subscription magazine site offers a free newsletter caregivers can sign up for, discussion forums, web links, articles, and care giving tips.
Transplant Health
http://www.transplanthealth.com/login.asp
Calling itself an interactive resource for healthy living, the site requires a login.
Transplant Life
http://www.transplantlife.com
Sponsored by Fujisawa, the site offers easy to understand information on liver and kidney transplants and how to stay healthy during the wait and after surgery.
Transplant Living
http://www.transplantliving.org
UNOS has prepared this site specifically for patients. It offers stories of recipients and donors. Also on the site are: Organ Datasource, Transplant 101, Links, Find a Center, Rx Corner, some facts and figures, and information on living donation. A MELD/PELD calculator for liver patients is on the site.
Transplant News
http://www.trannews.com
Offers a subscription newsletter on transplant topics (policies, international news, drugs, research), and an annual transplant directory that lists groups, web sites, government agencies, and other resources on the topic of transplant. There is an excellent list of reliable web sites although this list is not lengthy.
Transplant Partnering Program
http://www.tppp.net
Sponsored by Roche Laboratories, the site has basic information for kidney, liver, heart, and lung patients, as well as their caregivers, and offers family support, and numerous booklets to download.
Transplant Recipients International Organization (TRIO)
http://www.trioweb.org
Offers transplant and organ donation information and resources for transplant candidates, their families and donors and their families. Includes organ donation promotion and links to local chapters.
Transplant Speakers International
http://www.transplant-speakers.org/entry.html
The organization offers speakers on transplant topics to community groups searching for programs of interest. It also offers the chance to sign up to become a trained speaker on transplant topics. This site is for those who want to help solve the organ shortage crisis.
Transweb
http://www.transweb.org
Offered by the University of Michigan and other sponsors, Transweb is a classic transplant site that offers patients information, promotes organ donation, addresses myths, presents news, personal stories, and a search engine.
United Network for Organ Sharing
http://www.unos.org
The site is at a high technical level and is designed for professionals in the transplant community. A knowledgeable patient can find his or her way through it, however. Included are policies of the organization for organ allocation, data, links, resources, and links respectively to the Coalition on Donation, Organ Procurement and Transplant Network and Transplant Living.
United States Renal Data System
http://www.usrds.org/adr.htm
The national database on end stage renal disease is a US government funded project. Aimed primarily at researchers, the site may prove useful for those looking for information on such topics as chronic kidney disease, incidence and prevalence, patient characteristics, outcomes, mortality, and related data.
Scientific Registry of Transplant Recipients
http://www.ustransplant.org
Information can be found here on wait lists, survival rates, demographics, characteristics of patients, and related information for specific centers. The site is sponsored by UNOS and is maintained by the University of Michigan.
