In April, I walked around Cloud Gate in Chicago at the Living Donors’ Guinness World Record event approaching donors to ask if they would be interested in participating in the survey and doing my best to explain why I was doing it.
One thing that struck me was how many times someone would tell me that they had participated in another similar large-scale study or refer me to some other resource that they found helpful. That’s encouraging and I hope the information and our broader understanding of the living kidney donor experience continues to grow over time.
In the survey, I asked donors to share the online resources that they found to be most helpful as they navigated the process. Here are some of the ones mentioned:
- Living Donors Online
- Closed Facebook Groups
- Living Donor 101
- The Reluctant Donor (book)
- University of Minnesota / Long Term Donor Outcomes
- National Kidney Foundation (NKF)
- United Network of Organ Sharing (UNOS)
- National Center for Biotechnology Information (NCBI)
- American Transplant Foundation
- Organ Procurement and Transplantation Network
- Alliance for Paired Donation
- American Living Organ Donor Fund
Have a resource you think would be helpful to share? Let me know.