The most important thing you need to do after you’ve joined is to make sure you let us know how to contact you! If you are matched with a patient, it’s possible that this will be years after you joined – so if you move, change your phone number or email address, please go to the update donor details page and let us know.
After you join, the medical information we collected about you – such as your tissue and blood type – is shared anonymously and securely with accredited hospitals and international registries that are looking for a donor that matches their patient.
If you are found to be a likely match, we will contact you and ask you to provide us with some additional information and blood samples, to further assess how well you match the patient and the likely success of a donation. We will then share this information – again, anonymously and securely – with the patient’s medical team so they can select the donor that gives the patient the best possible chance.
On average, at this stage around 8 likely matches are identified from around the world for each patient – although some patients may only have 1 likely match. So if you get this call from us, you should know that there is a strong possibility you will be asked to donate and we will discuss with you any questions or concerns you may have about proceeding. As a volunteer donor you have the right to withdraw at any time; and while withdrawing at this stage does have significant implications for the patient, withdrawal at a later stage can have life-threatening consequences for them.
So it’s really important that you think carefully before joining the registry – and if you decide that this isn’t for you, please don’t wait for this call to tell us, go to the update donor details page and let us know.
This stage can take as long as 3 months to complete, as all the additional testing is conducted on all of the donors identified as likely matches. Once the patient’s team decides which donor to proceed with, you will hear back from us to let you know whether you are proceeding to the next stage (Work-up) or no longer need to stand by. We often find our donors are disappointed not to proceed, but please don’t take it personally! Just by being in the donor pool you gave that patient their best possible chance of success.