Many patients would like the opportunity to connect with their donors. If you receive a bone marrow transplant from an unrelated donor on Be The Match Registry®, you will know very limited information about your donor at the time of your transplant. After transplant, contact between you and your donor will depend on Be The Match confidentiality policies and the policies of other countries.
According to these policies, in most cases, you and your donor may have anonymous contact during the first year after transplant. This includes sending cards, letters, and gifts without revealing your identities.
You and your donor may want to have direct contact with one another. In many cases, this is possible after a waiting period of at least one year, however each case is unique. There are a number of reasons you might have to wait longer than one year, or that you might not be able to directly contact your donor at all. The confidentiality policies are in place to protect the privacy of both you and your donor.
Protecting your privacy
Be The Match Registry follows strict confidentiality guidelines, based on U.S. federal laws, to protect the privacy of both you and your donor. Other countries also have confidentiality guidelines.
- During the first year after transplant, most centers allow anonymous communication, such as letters, cards and gifts, between you and your donor.
- Some registries allow direct contact between donors and recipients if both you and your donor consent, but the waiting period varies by country.
- Some centers do not allow any direct contact between recipients and donors.
- All cord blood donations are anonymous from the time they are donated. So if you received a cord blood transplant, you will not be able to have any contact with your donor.
Please be assured that direct contact between recipients and donors is a choice, not an obligation. For many reasons, you or your donor may choose to not have any contact with each other. Transplant and donation are very personal emotional experiences, which people deal with in different ways.
Guidelines for anonymous contact
United States law requires us to have a system to keep donor and patient information confidential, as do the laws in other countries. Our post-transplant communication guidelines are a crucial part of this system.
Within the first year of donating, transplant centers in most countries will allow anonymous contact. All letters, cards, and gifts must be sent through your transplant center. Your communications will be checked to ensure that no identifying details are shared.
Anonymous contact means that you cannot include any information that could reveal your identity. Here are some guidelines for anonymous contact with your donor:
|Okay to send||Do not send|
|Your sex||Names, including initials, nicknames or made up names for yourself, your donor, friends or family|
|Your age||Your city, state, geographical region or country - including mention of a landmark, such as the Golden Gate Bridge|
|Your general profession, such as teacher, but not the name of your employer||Your specific job title, such as Marketing Representative for Target Corporation|
|Description of your transplant experience, without mentioning the name of your doctor or transplant center||The name, location or number of your transplant center or hospital|
|Greeting cards||On greeting cards - the name, address, country of the greeting card publisher, a currency (such as dollars) or a barcode|
|Small gifts of appreciation||Gifts of high monetary value or gifts that are easily broken|
|Non-perishable food or candy||Food that can spoil, such as fruit or baked goods|
|CDs, tapes and DVDs in the original wrapping with seals unbroken||Personally mixed or recorded CDs, tapes or DVDs|
|Gifts that might imply the location of the sender, such as a CD by a local artist|