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Llame al: 1 (888) 999-6743
De lunes a viernes, de 8:00 AM – 5:00 PM (Horario central)
CORREO ELECTRÓNICO: pacienteinfo@nmdp.org

Many patients hope to connect with their donor after transplant. In many cases, this happens. But, there are privacy rules that limit when and how you can connect after transplant. Depending on where you and your donor live, you may never be able to connect. These rules sometimes feel frustrating, but they are in place to protect you and your donor.

Some patients don’t want to connect with their donor after transplant. That’s OK too. Or, your donor may not want connect. It can feel confusing or sad when that happens. But whether you or your donor want to connect is a personal decision for each of you. There is no right or wrong choice.

Remember, your transplant team and the Be The Match® Patient Support Center is available to support you.

Rules

If you want to connect with your donor, here are rules to know:

  • If you had a cord blood transplant, you won’t be able to have any contact with the person who donated the cord blood.
  • Be The Match Registry® rules are based on U.S. laws. If your donor is from a registry in a different country, their registry will have their own laws and rules. These rules are there to protect you and your donor’s privacy.
  • During the 1st year after transplant, most registries will let you and your donor send letters, cards and small gifts back and forth – as long as you keep them anonymous. Anonymous means that you can’t give away any personal details, including names and where you live.
  • After a waiting period, some registries will let you and your donor share your name and contact information – but only if you both agree. This is called direct contact.
  • In the U.S., you have to wait 1-year after your transplant before you can ask for direct contact, but in many other countries the waiting period is longer. If you live in the U.S., but your donor is in a country where the wait is longer, you will have to wait until their waiting period is over.
  • Some countries have laws that say donors and patients can’t ever have direct contact. If your donor is from one of these countries, you will never know their name or other personal details about them. But you might still be able to send anonymous letters, cards or small gifts.

What is anonymous communication?

This is a private way to connect with your donor, even if you don’t want to have direct contact. If you might want to have direct contact someday, it’s a good idea to start with anonymous communication. That way you can get to know each other, while still keeping your privacy.

In most cases, you and your donor can have anonymous contact starting right after your transplant. This includes sending cards, letters, or a gift without revealing any information about yourself that could identify who you are, like names and locations. There is a list below of what to avoid. Remember, registries in other countries may have different laws. Your transplant center will tell you what is allowed if your donor is from another country.
Many patients hope to connect with their donor after transplant. In many cases, this happens. But, there are privacy rules that limit when and how you can connect after transplant. Depending on where you and your donor live, you may never be able to connect. These rules sometimes feel frustrating, but they are in place to protect you and your donor.

What can I send?

  • Letters or cards. Keep it simple and from the heart. It means a lot to donors to get a simple thank-you card and to know how you are doing.
  • 1 small one-time gift that costs less than $50 dollars.

What can’t I send?

Letters

  1. Names - no names are allowed at all, including;
    • Nicknames for you, your family members, friends or pet
    • The name of your employer
    • Local artists, groups, or performers
    • Sports team references, such as names or logos
    • Professional contacts, such as your transplant doctors or your teachers
  2. Transplant center name, number, or location
  3. Recipient identification numbers
  4. Any location more specific than country, including mention of landmarks
  5. References to organizations, causes, or local community groups
  6. Personal dates, such as birthdays or anniversaries
  7. Photographs

Gifts

  1. Anything that costs more than $50 U.S. dollars in retail value, even if you were able to buy it for less than that
  2. Gifts that someone might trace back to you, including one-of-kind items
  3. Anything that tells the donor to look at or do something on social media/internet
  4. Items that could reveal your specific location
  5. Food or candy that could spoil or that needs refrigeration
  6. Homemade food
  7. Beverages
  8. Gift cards or certificates, in any amount
  9. Money, in any amount
  10. Gifts made of photographs, including photo books, magnets, clothing, etc
  11. Recordings, unless available in mass market and still in original packaging, this includes toys or cards that you can add voice recordings to
  12. Items that have identification numbers or are limited editions
  13. Gifts that could be easily broken

If you send something from this list, or if you send something that could reveal your identity even if it’s not on the list, then your item will be edited to remove some information – or it could be sent back to you.

How do I send an anonymous letter?

Tell your transplant team that you want to send an anonymous letter to your donor. They will help you. Once you give your letter, card or gift to your transplant team, it’s reviewed several times to make sure all rules are followed. Here are the steps:

  1. You give it to your transplant center coordinator
  2. Transplant center will review. If it’s OK, they’ll send it to Be The Match.
  3. Be The Match will review it. If it’s OK, we’ll send it to the donor center.
  4. Donor center will review it. If it’s okay, they’ll send it to your donor.

All of these reviews and mailings can take some time, so your donor will not get what you sent for several weeks, possibly – or even longer, especially if you are in different countries.

How do I connect directly with my donor?

Tell your transplant team that you want to contact your donor directly. They will let you know if it’s possible and make the request for you. In many cases, this is possible after a waiting at least 1 year after transplant. But each case is unique. You might have to wait longer, or you might not be able to directly contact your donor at all. The confidentiality rules protect your privacy and your donor’s privacy.