Information for Patients

Sharing your story

Communicating with your donor

It is critical that the right to privacy of both the donor and recipient are protected at all times. Contact between a recipient and their donor is not without risk, especially if a second or subsequent donation is required. For example, a donor could seek a material reward for their donation; or the donor may feel coerced to provide a second donation if required.

However, it is natural to want to write a letter or a card to your donor, and ABMDR can pass this on to the donor for you. We ask that you keep any correspondence anonymous, which means no names, addresses, birth dates or where you received your transplant.

If it has been two years since your transplant and there has been correspondence between you and your donor, ABMDR can arrange for contact details to be exchanged if you both wish. This will allow you to get in touch directly. Please note, however, that if your donor is from overseas, not all registries allow contact between donor and recipient.

Sharing your story

By sharing your story online, you can help us recruit more donors. We have provided some guidance around sharing your experience to make sure that you protect your privacy, as well as the donor’s.

When sharing your story online, you can:

  • Share your transplant experience, although we advise that you withhold the exact date of your transplant
  • Let others know you are receiving a transplant from an unrelated donor, keeping any information you may have learned about the donor (e.g. age, gender, location) out of your posts
  • Share how you felt when you were told a donor had been found for you, and what their donation means to you
  • Spread the word about the need for more Australian donors – including how to join the registry, who make the best donors (young men, 18-30 years, from all ethnicities), and Australia’s need for additional government investment into recruiting blood stem cell donors.

Please don’t share any correspondence between yourself and your donor, or images of your transfusion bag. We strongly advise that you do not try to identify or contact the donor directly through social media, or respond to any direct contact requests from possible donors.