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Our History

Background

The waiting list for organ transplants continues to grow rapidly, with almost 100,000 transplant candidates currently on the U.S. list. Of these, almost 77,000 are waiting for a kidney transplant and almost 23,000 are waiting for other organ transplants, such as liver, lung, heart or pancreas.

The number of deceased and living donors has continued to grow in the last ten years; however, the number of people waiting has expanded more rapidly.

As living donation becomes more and more common, thousands of individuals contact the National Kidney Foundation in search of information and support. Whether they have already donated, are undergoing testing to become donors, are family members or friends of potential or actual donors, or are simply researching the process, people have a common want to connect with other donors and medical professionals who can understand their concerns.

National Kidney Foundation Initiatives

Here are some of the NKF’s past and present initiatives related to living donation, transplantation and prevention of kidney disease. In addition, NKF staff members respond to hundreds of calls and emails about living donation every week.

A free information packet for potential donors is also available by writing to livingdonors@kidney.org

Consensus Conference on Living Donation

On June 1 and 2, 2000, more than 100 representatives of the transplant community, including physicians, nurses, ethicists, psychologists, lawyers, scientists, social workers, transplant recipients and living donors met in Kansas City, MO under the sponsorship of the National Kidney Foundation and the American Societies of Transplantation, Transplant Surgeons and Nephrology to evaluate current practices of living donor transplantation of the kidney, pancreas, liver, intestine and lung.

The goal of the Conference was to develop recommended practice guidelines for all those concerned about the well-being of the live organ donor. These guidelines were published in the December 13, 2000 issue of the Journal of the American Medical Association.

Consensus Conference on Non-Directed Donation

Following the success of unrelated living donations from spouses, friends and coworkers, transplant professionals began to explore non-directed donation, or donation from a volunteer to an anonymous recipient.

On May 31, 2001, members of the transplant community met in Boston, MA to develop ethical guidelines for health care professionals involved in the care of potential non-directed donors. Sponsored by National Kidney Foundation, the Conference included representation from the American Society of Transplantation, American Society of Transplant Surgeons, American Society of Nephrology, United Resource Networks, United Network for Organ Sharing, Association of Organ Procurement Organizations, National Institutes of Health and the Division of Transplantation of the Health Resources and Services Administration.

Conference participants developed a report entitled "The Nondirected Live-Kidney Donor: Ethical Considerations and Practice Guidelines," published in the August 27, 2002 issue of Transplantation.

Conference on the Medical Evaluation of the Living Renal Donor

Discussions in this 2004 conference focused on the living kidney donor medical evaluation with regard to hypertension, diabetes, obesity, dyslipidemia, cardiovascular and pulmonary risk, stones, infection, cancer, inherited and primary kidney disease, pregnancy, renal artery stenosis, orthostatic proteinuria, glomerular filtration rate, and other surgical risks.

International Forum on the Care of the Live Kidney Donor

Published in Transplantation. This landmark conference (2004) brought together worldwide leaders in transplantation to develop global recommendations regarding the informed consent process, short-and long-term complications and more.

Early Transplant Conference

Published in CJASN. Participants in this 2007 conference explored the benefits of early transplantation on costs and outcomes, identified current barriers and recommended specific interventions to overcome those barriers.

U.S. Transplant Games

The U.S. Transplant Games are an Olympic-style event held every two years. They are the only national athletic competition for recipients of life-saving organ transplants, and the largest gathering of transplant recipients, donor families, and living donors in the world.

The Games are more than a sporting event. They are a recognition of the spirit behind organ and tissue donation and a celebration of the lives that have been saved by donation and transplantation. They are an opportunity for transplant recipients to celebrate their renewed life and for donors and families to be honored for their gifts.

The Games include a Living Donor Recognition Event, workshops and sharing sessions for living donors, a Coffeehouse to share experiences and stories, and a chance to cheer on the transplant athletes.

With extensive media coverage, the Games highlight the successes of transplantation and the need for more donors. The 2008 Games generated over 200,000,000 media impressions with coverage in USA Today, The Boston Globe, Woman’s Day, The Associated Press, Entertainment Tonight, Sporting News Radio Network, Parents Magazine, CNN, Fox and Friends, AOL and the Washington Post, to name a few.

The next Games will be held July 30- August 4, 2010 in Madison, Wisconsin.

National Donor Recognition Ceremony and Workshop

In recognition of the generosity of organ and tissue donors and the widening disparity between the number of donor organs and patients needing them, in 1994, the Division of Transplantation (DoT) initiated and implemented the first national program, the National Donor Recognition Ceremony and Workshop (NDRCW), to pay public tribute to America’s organ and tissue donors. The overall goals for the program were and continue to be two-fold: 1) to provide an occasion for the Federal Government, in partnership with other national organizations and corporations, to honor and pay tribute to the Nation’s donors; and 2) to increase public awareness of the need for donation. The Federal Government has contracted with the NKF's National Donor Family Council to implement the event since 1995.

The weekend includes a Donor Recognition Ceremony and workshops/sharing sessions for donor families, living donors and transplant professionals.

Kidney Walks

The National Kidney Foundation’s Kidney Walk is a non-competitive, fundraising walk focusing on education and prevention of kidney and urinary tract diseases, as well as awareness of the need for organ donation. The Kidney Walk presents an opportunity for family, friends and colleagues to participate in an inspiring, community-based event which calls attention to the need for early detection of kidney disease while supporting NKF’s patient services, public and professional initiatives and kidney research.

The NKF’s Kidney Walk presents an occasion for dialysis patients, organ transplant recipients, donor families, living donors, the medical communities, and the general public to celebrate LIFE and support the Foundation’s mission. Kidney Walks are held all over the country from early spring until late fall.

NKF Golf Classic

Twenty-six million people have chronic kidney disease and another 20 million are at risk. By signing up to participate in a NKF Golf Classic Tournament, your entry fee, a portion of which is tax deductible, helps support the National Kidney Foundation, the leading voluntary health organization dedicated to the detection, prevention and treatment of kidney and urinary tract diseases. The NKF provides vital patient and community services, patient advocacy, public and professional education, research and organ donation programs.

People Like Us

To mobilize and unite the voices of the more than 26 million people affected by chronic kidney disease (CKD), organ and tissue donation and transplantation, the National Kidney Foundation (NKF) established People Like Us. People Like Us is a growing movement of empowered individuals with CKD, dialysis patients, transplant recipients of all organs, donor families, living donors, family members and others who are:

Lotsa Helping Hands

The National Kidney Foundation’s (NKF) "People Like Us" initiative, a growing movement to empower, educate and enable people with chronic kidney disease (CKD), transplant recipients, donors and family members, has partnered with Lotsa Helping Hands to provide an online resource for its many care givers.

Lotsa Helping Hands is a simple, immediate way for friends, family, colleagues and neighbors to assist loved ones in need. It is an easy-to-use, private group online calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other necessary tasks. There is no cost to your family to use this system. For more information on how this site works visit or to set up an account visit: www.kidney.lotsahelpinghands.com

Public Policy Initiatives

A large gap exists between the need for organs for transplantation and organ availability. NKF works to increase the supply of organs for transplantation by: helping to remove financial disincentives for living donors; assisting transplant recipients to recover through expansion of Medicare coverage of immunosuppressive drugs; and promoting measures to expand the pool of available organs.

For more information, visit:
Transplantation and Organ Donation
http://www.kidney.org/news/pubpol/pdf/HR710-3_Dingell.pdf
Increase Living Kidney Donations (PDF 40KB)

Website at www.livingdonors.org

The NKF’s website on living donation, www.livingdonors.org, is a comprehensive resource for anyone affected by living organ donation, including living donors, potential donors, family and friends, and medical professionals. Through www.livingdonors.org, visitors can:

The website continues to expand to include detailed information about the donation process, risks and benefits, making the decision, paired donation programs and more. It was recently rated as the #1 website on living donation by Kidney International for coverage, accuracy and quality.

Coffeehouse Conversations

NKF’s “People Like Us” is planning a series of telephone calls to empower participants by providing information from a panel of patient and professional experts on topics related to CKD, dialysis, organ and tissue transplantation and donation. These calls will be interactive, allowing participants to dial into a toll-fee telephone number and ask panelists questions following their presentations.

The first call in this series, being planned for late October/early November 2008, will focus on the new Centers for Medicare and Medicaid Conditions for Coverage for End-Stage Renal Disease Facilities rules. Future Coffeehouse Conversations telephone forums are being planned to educate kidney patients, family members, living donors, donor families and transplant recipients about various topics of interest and to encourage people to become their own best advocates by participating in decisions about their health and involvement in the public policy process.

Transplant Chronicles

Transplant Chronicles is a free quarterly online newsletter addressing issues faced by transplant candidates, recipients and donors. Current and past issues are available online at www.kidney.org/transplantation/transAction/chronicles.cfm

Protection of Living Donors

The National Kidney Foundation opposes all efforts to legalize payments for human organs for use in transplantation and urges the federal government to retain the prohibition against the purchase of organs that is codified in Title III of the National Organ Transplant Act of 1984.

Offering money for organs can be viewed as an attempt to coerce economically disadvantaged Americans to participate in organ donation. Furthermore, since the economically disadvantaged have been shown to be less likely to be organ transplant candidates, financial incentives for organ donation could be characterized as exploitation.

While payment for organs has real potential to undermine the transplant system in this country, its ability to increase the supply or organs for transplantation is questionable. In a recent survey of families who refused to donate organs of their loved ones who have died, 92% said that payment would not have persuaded them to donate. Public opinion polls and focus groups have disclosed that many Americans are not inclined to be organ donors because they distrust the U. S. health care system, in general, and, in particular, because they are concerned that the health care of potential organ donors might be compromised if their donor status were known. A program of financial incentives for organ donation is not likely to change these perceptions and, indeed, may aggravate mistrust….

For more information, visit Financial Incentives for Organ Donation and Testimony of the National Kidney Foundation

Kidney Early Evaluation Program (KEEP)

Twenty-six million American adults have Chronic Kidney Disease (CKD), and millions more are at risk. Most people are not aware that they have CKD or are at risk.

The National Kidney Foundation's Kidney Early Evaluation Program (KEEP®) offers free screening for those at risk - anyone 18 years and older with high blood pressure, diabetes or a family history of kidney disease. It is designed to raise awareness about kidney disease among high risk individuals and provide free testing and educational information, so that kidney disease and its complications can be prevented or delayed.
KEEP provides three simple tests that determine kidney function to nearly 2,500 people each month in dozens of cities across the U.S. Participants receive a comprehensive health risk appraisal, blood pressure measurement, blood and urine testing and the opportunity to discuss their health and review results with onsite physicians.

The program, which recently screened its 100,000th participant, is finding kidney disease at the earliest stage possible. Global KEEP efforts are underway.

KEEP is critical in slowing the progression of chronic kidney disease and preventing the need for a transplant. While increasing donation is a commendable goal, the best outcome is to prevent people from ever needing a transplant in the first place.


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