Living Donor websites, blogs, and information

There are many organizations that 'facilitate' donor and recipient matches. They operate outside of UNOS/OPTN, which means they are not held to any kind of standards. Many charge a fee, which is highly unethical and contrary to UAGA and NOTA. Non-profit does not mean 'no paycheck'. Their main priority is finding organs to harvest; they do not care about the short or long term well-being of living donors.

Non-profit organizations in the U.S. must make their payrolls available to the public. To find out what public policy officials (or other individuals) make, see Guidestar.org

If you want to suggest a link, or are interested in swapping links, please contact info@LivingDonor101.com

Living Donor Specific:

LODAP: Living Organ Donor Advocate Program. Nurses and other health-care professionals whose sole purpose to advocate for living donors individually and systemically. The only site that details the psychological and emotional impact of donation on the donor.

Living Donors Online: Information on all types of living donation, plus message boards.

Laurie's story of her living living donation to her sister. Not the warm fuzzy stories you see in your local papers, that's for sure.

The National Kidney Foundation's page on Living Donation: General information, Q&A, a walk-through of the process, etc. Their section regarding 'what to expect after donation' contains no information about a donor's emotional or psychological well-being. Keep in mind the natural conflict between promoting transplants for those with end-stage renal disease (NKF's main constituency) and protecting living donors.

Public Policy Departments or Organizations:

The Organ Procurement and Transplantation Network (OPTN): Maintains the only national patient waiting list and features the most comprehensive data available regarding transplants.

The United Network for Organ Sharing (UNOS): Located in Richmond, VA, UNOS administers OPTN under a private contract awarded in 1984, and works with medical professionals, transplant recipients and donor families to develop organ transplantation policy.

Centers for Medicaid & Medicare Services: Segment of DHHS that handles Medicare & Medicare, including conditions transplant centers meet in order to receive Medicare & Medicaid patients and reimbursement.

Advisory Committee on Organ Transplantation (ACOT): Division of DHHS to provide 'independent review and advice to HHS concerning revised organ allocation policies'. 'The advisory committee will examine transplantation data needs, as well as other transplantation issues, including scientific, public health, ethical, coverage and financing issues'.

The Joint Commission Accreditation Health Organizations (JCAHO): Accredits and certifies U.S. health organizations, certifying quality and adherence to certain performance standards.

Health Resources and Services Administration (HRSA): Also part of DHHS, assigned with the responsibility of improving access to health care services, and oversees organ, bone marrow and blood donation. Parent agency to OPTN.

American Society of Transplant Surgeons: Non-profit consisting of over 1100 surgeons, physicians, scientists and other health professionals.

Global Observatory on Donation and Transplantation: In collaboration with the World Health Organization, to promote the ethics of donation, ensure oversight and increase access to transplantation.

Misc.

OPTN has a great transplant-related glossary.

Additional Reading:

2007 GAO report on Organ Transplant Programs' Oversight by OPTN and CMS

Declaration of Istanbul: Global consortium regarding organ trafficking and transplant tourism in May 2008. Much to say about how living donors should be treated, including numerous items the U.S. itself isn't doing.

We Need a Registry of Living Kidney Donors: essay from Bioethics Forum after two studies revealed some living kidney donors end up on the transplant waiting list themselves.

Living Donor: Process, Outcomes & Ethical Questions. Staff discussion paper for September 2006 meeting for the President's Council on Bioethics. Transcript of the meeting.

Adult to Adult Living Liver Transplantation study, compiling data on the outcomes of all living donor transplants across the U.S. Results available in .pdf here.

Organ Donation Improvement and Recovery Act of 2004. A discussion of ODRIA - what it changed, what it means - and not the painful legalese of the law itself.

Reassessing Living-Donor Liver Transplantation: From 2003. Discussion of living donor deaths and proposed changes in procedures.

Consensus Statement of the Amsterdam Forum on the Care of the Live Kidney Donor. From 2004, a gathering of over 100 experts from over 40 countries. The objective was to develop an international standard of care for the live kidney donor.

Death of liver donor Mike Hurewitz, as reported by Daily Press.