Join the marrow donor Registry and give hope to

Join the marrow donor Registry and give hope to patients everywhere

� | Life. It’s in you.

When you join the Registry, you can save a lifeEvery day thousands of patients who need a life-saving transplant search for a donor.

But only 30 percent will find a suitable donor within their family. The remaining 70 percent must find an unrelated donor whose tissue type matches theirs. Take the first step to save a life—join the National Marrow Donor Program® (NMDP) Registry.

When you become a member of the Registry, you join the global movement of more than 10 million donors who stand ready to give someone a future.

Even with a Registry of millions, there are many patients waiting and hoping, unable to find a match. You could be the one a patient needs. You’ll never know unless you join.

Life. It’s in you.

Joseph was 14 years old when he lost his dad to leukemia. As an adult he joined the Registry and turned out to be a match for an 11-year-old girl, Katie, who also had leukemia. Three years later Katie is an active teenager and a foreign exchange student. Joseph and Katie plan to meet when she comes home.

“I would absolutely donate again,” Joseph says. “It’s probably the easiest way to save a life.”

Joseph was 14 years old when he lost his dad to

National Marrow Donor Program | �

The National Marrow Donor Program helps people who need a life-saving marrow or cord blood transplant.

Registry guidelines To be a member of the Registry, all you need is to:

• Be between the ages of 18 and 60

• Be willing to donate to any patient in need

• Meet the health guidelines

Steps to joinThese steps may be completed online or in person at a donor recruitment drive.

1. Complete a registration form with contact information, health history questions, and a signed agreement to join the Registry.

2. Pay for tissue typing costs, if any. The tax-deductible cost depends on whether you join online at marrow.org/join or in person. Frequently, a sponsor or company pays for tissue typing.

3. Give either a swab of cheek cells or a blood sample so your tissue type can be tested.

That’s it! Your tissue type is then added to the Registry.

Doctors search the Registry when they need to find a donor who can make a transplant possible for their patient.


How to join online1. Log on to marrow.org/join and click

on “Join Now.”

2. Review donor eligibility requirements.

3. Complete the online registration form and pay for tissue typing costs.

4. Receive by mail a simple, do-it-yourself tissue typing kit. The kit includes everything you need to collect a sample of your cheek cells using cotton swabs.

5. Return the kit for tissue typing. You will then be added to the Registry.

The “Do-It-Yourself” tissue typing kit


Althea (left) donated to Patricia, right.

“My donor saved my life,” Patricia tells us. “I am a single mother, and she gave my kids their mother back.”

Says Althea, “I would do it again in a heartbeat. She really touched me. I don’t know how you explain it until you’ve saved someone else’s life.”

Althea (left) donated to Patricia, right.

Health guidelines These conditions would prevent you from joining:

• HIV or risk for HIV

• Hepatitis or risk for hepatitis

• Most forms of heart disease or cancer

• Chronic lung disease

• Diabetes requiring insulin or diabetes-related health issues

• Diseases that affect blood clotting or bleeding

• Recent back surgery, or severe or ongoing back problems

• Autoimmune/neurological disorders such as lupus, rheumatoid arthritis, or multiple sclerosis

• An organ or marrow transplant recipient

• Significant obesity


The NMDP has arranged and provided transplants for more than 25,000 patients.

What is a marrow transplant?It’s a life-saving treatment for people with leukemia, lymphoma and many other diseases.

First, patients undergo chemotherapy and/or radiation to destroy their diseased marrow. Then a donor’s healthy blood cells are given directly into the patient’s bloodstream, where they can begin to function and multiply.

In order for a patient’s body to accept these healthy blood cells, the donor’s tissue type needs to match the patient’s type as closely as possible.

How is a match determined?A match occurs when one person’s tissue type is very similar or identical to another’s.

Human leukocyte antigen (HLA) testing determines whether a donor and patient are a good match.

HLA antigens are found on most cells in your body. Your immune system uses HLA to recognize which cells belong in your body and which do not.

The closer the match between the patient’s HLA and yours, the better for the patient.

The basics of marrow transplantation


Does race or ethnicity affect matching?Racial and ethnic heritage are very important factors.

Because HLA tissue types are inherited, patients are most likely to match someone of their own race or ethnicity.

Donors of these backgrounds are especially needed:• Black or African American

• American Indian or Alaska Native

• Asian

• Native Hawaiian or other Pacific Islander

• Hispanic or Latino

• Mixed heritage While she was in college, Maria (left) joined the Registry and donated to Adrian (right).

“When I found out that Latino patients had a harder time finding a match because there weren’t enough Latinos and Hispanics on the Registry, I didn’t think it was fair,” Maria says. “I believe everyone deserves the best chance possible.”

While she was in college, Maria (left) joined the Registry


The Donation ProcessIf you match a patient, these are the steps you’ll follow:

1. Attend an information session.

2. Receive a physical exam.

3. Give marrow through a surgical procedure (marrow donation), or give blood-forming cells through apheresis (PBSC donation).

4. Recover from any side effects.

5. Receive follow-up support.

You will get further information every step of the way.

How likely is it that I will donate to someone?We cannot predict the likelihood because there is so much diversity in tissue types.

You may never be identified as a match for someone needing a transplant.

Or if yours is a common tissue type, you may be identified along with a number of other potential donors who match a patient. The patient’s doctor decides which donors will be contacted.

If we call to say you are a match for a patient, you may turn out to be the only one who can save the patient’s life.

What happens if I match a patient? We will ask you for another blood or cheek swab sample to make sure you are the best possible match for the patient.

If the match is confirmed, we will schedule an information session so you can learn more about the donation process, risks and side effects.

Though almost all patient information is confidential, we can tell you the patient’s age, gender and disease.

We can also tell you the type of donation the patient’s doctor has requested—either marrow or cells collected from the blood, called peripheral blood stem cell (PBSC) donation.


If you consent, we will schedule a physical exam for you. The exam helps ensure that donating would not pose any special risks for either you or the patient.

When you are cleared to donate, your marrow or PBSC donation will be scheduled at the nearest NMDP center.

Who pays for donation expenses?Donors never pay for donating, and are never paid to donate.

Could I change my mind about donating? You have the right to change your mind at any time. Donating is always voluntary.

If you decide you do not want to donate, let us know right away. That way we can continue the search for another donor without dangerous—even life-threatening—delays for the patient.

Luke (left) was almost two years old when Randy (right) donated the cells that saved Luke’s life.

“Just to see Luke out running and playing and doing the things children should be doing is awe-inspiring,” Randy exclaims. “You can be the miracle somebody needs.”

Luke (left) was almost two years old when Randy (right)

10 | Life. It’s in you.

When Šárka, from Zidlochovice, Czech Republic, (right) needed a transplant, her doctors conducted an interna-tional search. Monica (left), living 4,000 miles away in Florida, was found to be the best match.

“What if that were my daughter?” Monica says. “I knew I had to donate.”

When Šárka, from Zidlochovice, Czech Republic, (right)

Adult donors undergo one of two procedures:

• Marrow donation

• PBSC donation

Risks and side effects depend on the procedure used.

Marrow donation This is a surgical out-patient procedure.

While donors receive anesthesia, doctors use needles to withdraw liquid marrow from the back of the pelvic bone.

The donor’s marrow completely replaces itself within four to six weeks.

After donation, donors can expect to feel some soreness in the lower back for a few days or longer.

Most donors are back to their usual routine in a few days.

What is the donation procedure?

National Marrow Donor Program | 11

PBSC donation This is a non-surgical out-patient procedure.

Donors receive daily injections of a drug called filgrastim for five days before the collection, to increase the number of blood-forming cells in the bloodstream.

Then through a process called apheresis, a donor’s blood is removed through a needle in one arm and passed through a machine that separates out the blood-forming cells. The remaining blood is returned to the donor through the other arm.

Donors may experience headache or bone or muscle aches for several days before collection. These are side effects of the filgrastim injections and disappear shortly after donation.

How will I know which donation procedure will be used?When you join the Registry, you agree to donate by whichever method is needed.

The patient’s doctor asks for either marrow or PBSC, depending on what is best for the patient.

What happens after I donate?Your NMDP donor center coordinator will follow up with you until you are able to resume normal activity.

When asked about their discomfort, over 90% of donors are quick to point out that it was worth it to save a life, and they would do it again.*

* From “Pathways to Giving: Donors’ Experiences of PBSC and Marrow Donation”, Dr. Galen Switzer, et. al., University of Pittsburgh, Pittsburgh, PA., 1999.

1� | Life. It’s in you.

While transplantation is a life-saving therapy, not all recipients survive.

Sometimes their body cannot withstand pre-transplant chemotherapy and radiation.

Sometimes patient complications occur after the transplant.

But for many recipients, a transplant is successful and their best or only option. They would almost certainly die without it.

What is the risk to my recipient? The NMDP and our fund-raising partner, The Marrow Foundation®, provide funds to help patients both before and after their transplants. To learn more, visit marrow.org/help.

National Marrow Donor Program | 1�

Your recipient’s transplant center may provide up to three updates within the first year after transplant. Some transplant centers do not provide updates.

During the first year after transplant, some centers allow anonymous communication between you and your recipient.

Some centers allow direct contact between donors and recipients one or more years after the transplant, if both you and your recipient agree.

Will I get patient updates or meet my recipient?

Jake was a student when he got the call telling him he could help a very ill 6-year-old boy in urgent need of a transplant.

“I thought about the boy’s mother and her son, and about how much I loved my own family,” Jake says. “My decision to donate was an easy one.”

Jake was a student when he got the call telling him he

1� | Life. It’s in you.

If you match a patient, we will need to find you quickly.Updating your contact information is crucial!

Contact us if:

• Your phone number, name, or address has changed

• You have any major changes to your health

• You want to be removed from the Registry

Just log on to marrow.org/update or call us at 1 (800) MARROW-2 (1-800-627-7692).

Lamar (left) received his transplant from Adam (right).

“I’m so happy … Every time I think about it I’m almost in tears,” Adam tells us. “It’s not every day that you know you can sacrifice a small piece of yourself to help someone live. I was given that chance. I’m a true believer in miracles.”

Lamar (left) received his transplant from Adam (right).

National Marrow Donor Program | 1�

Join us in the worldwide effort to save lives through marrow donation.

Life. It’s in you.

Help today!Join the Registry.

Log on to marrow.org/join.

Tell your family and friends.

Every time you talk about this chance to save a life, you inspire others to get involved. Please invite them to visit marrow.org/join, where joining the NMDP Registry is more convenient than ever before.

Make a gift to The Marrow Foundation®.

The Marrow Foundation supports the work of the NMDP. Log on to www.themarrowfoundation.org.

Talk to people at your workplace.

Call 1-800-526-7809, extension 8183 to learn how your company can get involved.

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marrow.org 1 (800) MaRRoW-2 (1-800-627-7692)

National Marrow Donor Program: Entrusted to operate the C.W. Bill Young Cell Transplantation Program

The National Marrow Donor Program has now facilitated over 25,000 marrow and cord blood transplants.

Become an active member of the NMDP Registry and make the difference.

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Join the marrow donor Registry and give hope to