Plainly stated
How My Kidney Story works, and who pays for it.
If you are a transplant coordinator, a social worker, or somebody deciding whether this is safe to point a patient at — this page is for you, and it is meant to answer the question before you have to ask it.
What My Kidney Story actually is
A storytelling and sharing tool for people who need a living kidney donor, and for the friends and family who do the asking on their behalf. It produces a page worth sharing, flyers, and a structured way for an advocate to work through the people they could tell.
When somebody reading a campaign wants to find out whether they could be a donor, where that click goes depends on the campaign. If its transplant center publishes its own verified way for a donor to get in touch, the click goes straight there — skipping My Kidney Story entirely. Short of that, and today this is the only path that is actually live, it lands on our own short enquiry form. A named person at My Kidney Story reads it and writes back within a day, asks nothing medical, and points the person to that campaign’s transplant center. My Kidney Story does not evaluate anyone, does not learn the outcome, and does not pass their details to the patient.
That last point is worth stating on its own, because transplant centers routinely advise patients to publish a Google Voice number rather than their own so that a public appeal does not put their mobile in front of strangers. Enquiries never reach the patient at all.
Nobody has to face a blank box. When somebody writes their campaign, an assistant interviews them about their life and writes the first draft from their own answers, which they then edit. Try it on a made-up person — no account, and nothing you type is kept.
What My Kidney Story will never do
These are constraints rather than current policy. They are built into the data model and the code, and several of them are enforced in places a future change of mind could not quietly undo.
- No money, in either direction, ever
- Patients pay nothing. Champions pay nothing. Donors pay nothing. There is no subscription, no listing fee, no premium tier and no paid promotion of one campaign over another. Under the National Organ Transplant Act it is a federal crime to give or receive anything of value in connection with an organ, and My Kidney Story has no payments feature between any two people on it — not because we have decided against building one, but because the product has no money model that could ever grow into one.
- No medical data
- My Kidney Story stores no health information at all. Not test results, not kidney function, not medications, not diagnoses. The only health-adjacent field on the entire platform is which organ somebody needs, it is self-disclosed, and it is intentionally public. Everything clinical happens at a transplant center, which has the regulatory apparatus for it. We do not, and we have built the product so we never need it.
- No blood type, published anywhere
- Transplant centers are split on this and we have taken the centers' side. Around one in four living kidney donor transplants now runs through a paired exchange, so somebody who is not a match can still get their person a kidney. Publishing a blood type makes willing people rule themselves out on a fact that stopped being decisive years ago.
- No screening, no matching, no clinical judgment
- My Kidney Story does not evaluate donors, does not assess compatibility and does not decide who is suitable. When a campaign's transplant center publishes its own verified way for a donor to get in touch, the click goes straight there. Otherwise it reaches a named person at My Kidney Story, whose only job is to point the person on to that center's living donor team — never to judge them. Whichever way someone arrives, it is the transplant center's own independent living donor advocate, working for the donor, who can tell them no.
- No urgency, and no pressure
- There is no countdown, no urgent flyer template, and the writing assistant is forbidden from producing one. Language that leans on running out of time has been measured, in organ donation specifically, to reduce the number of people willing to come forward. It is the most emotionally satisfying appeal to make and it costs donors, so the product will not make it.
- No retouching of anybody's face
- Uploaded photographs get brightness and color correction and nothing else. No skin smoothing, no reshaping. This is a platform whose credibility rests on the person being real.
For transplant programs
We are not asking you to send us patients. You have a waiting list; you do not need demand.
Most living donor programs already tell patients to use social media to find a donor, and most already receive enquiries that way. The commonest complaint about it is that the enquiries arrive unprepared — people who have not been told what donation involves, what it costs, that they can stop, or that being the wrong blood type is not a dead end. That is the problem this is built to reduce, by answering all of it before the handoff.
The other gap is that this conversation almost always happens with the patient alone, and the patient is the person least able to do the asking. My Kidney Story is built around the advocate — the friend or relative who can.
My Kidney Story takes no payment from any hospital, receives no patient information from any hospital, and asks for no endorsement. A patient finds it themselves or hears about it from somebody who did.
Something not right?
If a campaign on this platform looks fraudulent, offers or solicits payment, or is otherwise not what it claims, tell us and we will look at it the same day. That is a standing commitment rather than a form: the credibility of every honest campaign here depends on the dishonest ones not surviving.