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CALL: 1 (888) 999-6743
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EMAIL: patientinfo@nmdp.org
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CONTACTE AL CENTRO DE APOYO AL PACIENTE

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 recipients 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 recipients 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.

General Rules

If you want to connect with your donor, here are some 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.
  • No communication can happen before the transplant day.
  • 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 emails, cards and letters back and forth as well as one small gift - as long as you keep them anonymous. Anonymous means that you can’t give away any personal details, including names and information regarding where you live (see additional rules below for the U.S.). But communication instructions will depend on the rules of your donor’s country and registry. Ask your transplant coordinator or team what the rules are for your donor. This is called anonymous communication.
  • 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 or direct communication.
  • 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 emails, cards, letters, or a small gift.

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 communicating through emails, 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.

Anonymous communication rules for the U.S.

If your donor lives in the U.S. you can send:

  • Emails, cards or letters.
  • 1 gift, with a maximum value of $50 U.S.
  • Keep in mind, you don't have to write a lot. Often donors appreciate short, simple notes. A note of thanks or appreciation for their donation can be very meaningful. 

If your donor lives in the U.S. emails, cards, letters and gifts cannot include:

  1. Names - no names are allowed at all, including;
    • Nicknames or initials for you, your family members, friends or pets
    • The name of your employer
    • Local artists, groups, or performers
    • Sports team references, such as names or logos
    • Professional contacts, such as your transplant medical staff, doctors or your teachers
    • Actual military branch names, instead just use the general term 'military'
  2. Transplant center or hospital name, number, or location
  3. Your registry name
  4. Recipient identification numbers
  5. Any location more specific than country, including mention of landmarks or regions
  6. References to organizations, causes, associations, or local community groups
  7. Personal dates, such as birthdays or anniversaries. Use generalities if you want to reference a certain time frame, use the words like 'recently', 'in the near future' or 'this year' rather than a specific date
  8. Photographs
  9. Anything that instructs the donor to look at or do something on social media/internet

In addition to all of the rules in the list above, gifts also cannot include:

  1.  Anything that costs more than $50 U.S. 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-a-kind items
  3. Items that could reveal your specific location
  4. Food or candy that could spoil or that needs refrigeration
  5. Homemade food
  6. Beverages
  7. Gift cards or certificates, in any amount
  8. Money, in any amount
  9. Gifts made of photographs, including photo books, magnets, clothing, etc
  10. Recordings, unless available in mass market and still in original packaging, this includes toys or cards that you can add voice recordings to
  11. Items that have identification numbers or are limited editions
  12. Gifts that could be easily broken are not recommended

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 could be sent back to you. 

How do I send an anonymous email, card, letter or gift?

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

  1. Give your letter or card 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. It 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 coordinator or transplant team that you want to share contact information with 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. They will be able to tell you what the rules are for your donor’s country and registry. The confidentiality rules protect your privacy and your donor’s privacy.

Who to contact for help?

If you have lost contact with your coordinator or have questions, contact the Be The Match Patient Support Center for help. 

    Call: 1 (888) 999-6743

    Email: patientinfo@nmdp.org