FAQs

Questions about joining

  • You need to be aged 18 to 35 to join, hold a valid Medicare card and generally in good health. See full health eligibility here

  • By completing a simple mouth cheek swab! You can order your swab kit online to complete at home and post back for free! Or complete a swab at an upcoming donor drive event that you plan to attend.

    You can also join through Red Cross Lifeblood next time you are donating blood, just ask the staff in the centre that you wish to join the blood stem cell donor registry and they’ll organise the rest!

  • No, if you are a blood donor it doesn’t mean that you’re automatically added to the stem cell donor registry. You need to specifically request to join the registry next time you donate blood.

  • No, there is no cost to join.

  • No, you don’t need to do a cheek swab if you have already joined the registry in the past through a blood donation.

  • Once your cheek swab saliva sample has been sent to the lab for testing, your tissue type or “HLA” – human leukocyte antigen will be determined. This is essentially your unique “code” which is cross-referenced with all the searching patient’s “codes” to see if you are match. No identifying information is stored, only your “code”.

    Your tissue type (“HLA”), blood type, and whether you’ve been exposed to cytomegalovirus (CMV), a common virus that can pose complications for transplant recipients is tested.

  • Your saliva sample is not stored anywhere and it is destroyed after it has been tested, the only thing that remains is your HLA tissue type “code” with no identifying information.

  • Your data and privacy related to joining the donor registry is probably safer than most of the apps you already have on your phone which often collect your data and information in the backgrounds!

    Our partner Stem Cell Donors Australia recognise the importance of respecting your privacy and protecting the confidentiality of you and your family’s personal and health information. They collect this information to ensure safe matching of potential donors and to maintain the quality of the registry database. They work closely with Red Cross Lifeblood and a network of health professionals and partner organisations, including registries in other countries. They do not provide information that would identify you to persons outside The Registry, The Blood Service or the health professionals involved in your care.

    If you are identified as a potential match your name will never be shared with the patient or their treating team. The information provided to other registries and treating doctors is solely to enable them to confirm your suitability as a match. If the match is confirmed and you agree to donate, only the hospital and health professionals involved in the collection process will know your identity. The Stem Cell Donors Australia full privacy policy can be viewed here.

  • Yes it safe. You can order your kit online and return your completed kit by placing it in a post box without any contact with anyone. Only complete the cheek swab if you are feeling well.

    Note that we especially need people to join during challenging times like a pandemic. 80% of Australian blood cancer patients receive their stem cells from an overseas donor. With outbreaks and border restrictions, this is a huge challenge. We need more Aussies to join our local registry to help combat this!

  • No! Everyone is welcome to join. Traditionally many people were excluded from doing things like donating blood but joining the registry is different.

    For example people who have had male-to-male sex can join the registry! No questions asked.

  • No! People who have lived in the UK during the “mad cow disease” period or travelled overseas can join the registry.

  • No! People who have gotten a tattoo can join the registry.

  • No! People who have engaged in intravenous drug use can join the registry, no questions asked!

    • Encourage someone you know aged 18 to 35 to join

    • Financial donation to UR The Cure or shop for items in our online fundraising store

    • Share information on your social media

    • If you’re under 18, fill in this form and we’ll send you a reminder that you’re eligible when you turn 18

    • Volunteer for UR the Cure (learn more here)

Questions about why we need people with particular characteristics to join

  • It’s amazing that everyone wants to help and in an ideal world we could have anyone and everyone join! However funding is limited so it becomes really important that when we use up a “spot” on the registry (which costs money), that we fill those spots with people who have the “ideal” donor characteristics” to increase the chances of patients finding their match.

    Patients with a culturally diverse or indigenous background are less likely to find their match in comparison to a “white” person because these diverse groups are underrepresented on the registry. Which is why we especially need people of diverse backgrounds joining. Examples of diverse backgrounds includes Middle Eastern, Asian, First Nations, Pasifika, African, Southern European heritage such Italian, Greek, Maltese, Spanish. And Eastern European such as Croatian, Serbian and Turkish, plus much more! Learn more about ethnicity here.

    • 60% of people on the Australian registry have a North Caucasian (“white”) background, the rest are split across small percentages of different ethnicities. 2.5% North African and Middle Eastern, 3.2% South Asian, 2.5% First Nation, 1.9% Pasifika, 17.4% Southern and Eastern European

    • If we DOUBLED the number of people currently on the registry as it is, it would only increase the chances of overall matching by 5%....and that’s because it’s heavily skewed to representing people with a North Caucasian (“white”) background. There’s no point adding more people who have a similar “sample type” as most people already on the registry, because it doesn’t necessarily increase the chances of patients finding their match.

  • Nobody likes to hear that they are “too old” in any circumstance! But in the case of stem cell donation, there is scientific evidence that younger stem cells perform better in a transplant which means a higher chance for a successful outcome for the patient. Younger stem cells basically perform better in a transplant which means less complications and a better chance of survival for the patient.

    • The most populated age group on the Australian registry is 46-55 years of age, the global donor pool in comparison is 26-35 years of age.

    • Over 20,000 older Australians will be retiring off the donor registry so we really need young people to join!

    • A patient’s chances of survival decrease by 3% every decade of the donor’s age, making younger donors crucial.

  • Males physically have more stem cells to give plus biologically don’t have to worry about pregnancy or breastfeeding that can get in the way of donating! And although we focus alot on needing people of culturally diverse or indigenous backgrounds to join, we in fact really need all young males to join, no matter what their background!

    • Only 4% of people on the registry are male so we really need more young men to join!

    • Australia’s donor registry is lacking to the point we rely mostly on overseas donors. If we don’t focus on recruiting males (and the other much needed characteristics of young people and diverse people), then doctors will continue to choose overseas donors which is riskier for patients .Getting our donor pool up to scratch is the best thing we can do to help patients!

Questions about donating stem cells

  • One of the most common misconceptions is that donating stem cells is extremely painful! Thankfully this is not the case!

    The most common way to donate your stem cells is through PBSC (Peripheral Blood Stem Cell) which is similar to giving a long blood donation. You can watch Netflix or scroll through your socials during your donation and return to normal activities afterwards. Learn more

  • Donating stem cells is not something that happens regularly. Only 1 in 1500 Australians will get called as a match and asked to donate their stem cells in any given year. In fact some people go their whole life without getting the call. But it’s still very important that you are committed and prepared to donate your stem cells when you join.

    It’s also important to keep your contact details up to date. And choose an emergency contact who will likely be around for a long time like a sibling rather than an older relative for example. This makes it easier to track you down if needed!

  • If you are donating through a Peripheral Blood Stem Cell (PBSC) donation which is the most common method, it takes approximately 3 to 4 hours

    If you are donating through a bone marrow donation (less common method), the procedure can take about 1 to 2 hours to complete, this can either be done as a day-stay or as an overnight stay.

    Both methods require some of your time beforehand to fill in forms and questionnaires and complete routine health checks. 

  • If you are doing a Peripheral Blood Stem Cell donation (PBSC), which is the most common method), you can usually return straight back to normal activities.

    If you are doing a bone marrow donation (less common method), you can usually go home the same day or you may need to stay overnight. The aches that you may feel afterwards can take a few days to disappear.

  • No! Your health is very important and your medical team will never put you through a procedure if they believe you are not healthy or fit enough, all the necessary checks are done beforehand. If you are doing a bone marrow donation (less common method), there are the usual risks associated with being placed under general anaesthetic or having surgery. The chances of a serious complication is very low.

    There has been a lot of research into donor health and there are no long term side effects for stem cell donation. Doctors will never risk one person's health in order to help someone else, both the donor and patient health is very important.

  • No! If you are doing a Peripheral Blood Stem Cell donation (PBSC), which is the most common method, a special drug is given to you in the lead up to your donation which stimulates the bone marrow and produces more stem cells. It is these excess stem cells that are donated, so you don’t actually lose any stem cells.

    If you are doing a bone marrow donation (less common method), then your body will replenish the bone marrow usually within 4 weeks. 

  • No! There is no cost to you as the donor. Only your time and commitment. Any travel costs associated are also fully covered.

  • If you match with a patient overseas this does not mean you need to travel to that country. You can donate your stem cells locally in Australia and they will be transported overseas.

    Stem cell donation occurs in most of the main cities in each State around Australia (except the Northern Territory). Travel expenses incurred to travel within Australia for a stem cell donation are reimbursed, they’ll even cover the costs to bring a support person with you and any accommodation required! Think of it as a free domestic holiday!

  • Although we know that almost everyone would be happy and proud at the chance to save another person's life, it is important to know that when you receive that first call saying you may be someone’s match you still have the opportunity to pull out. You are obligated to donate further along the process when the patient receives the high dose chemotherapy. From this point there is “no going back”, because if someone pulled out at that point, the patient would die without the stem cells to re-build their immune system. Do not take your decision to join the registry lightly! You need to be prepared to show a level of commitment when you join as it is not fair for patients to receive false hope. 

  • No. Although you may be inspired by a friend or family member who is searching for their match to join, you can’t ask to be specifically tested for a loved one who is sick (unless you are a sibling). When you join the registry you can potentially be matched with anyone, anywhere around the world.

    The chances of you matching with your loved one and also a complete stranger is extremely low. So don’t worry, in the unlikely event that you are the match for your loved then you will be called!

    It’s much more likely that if you match anyone, it’ll be someone you don’t know, maybe even someone living overseas. You need to be willing to donate your stem cells to anyone and you won’t know who that person is.

  • Your health and safety are very well protected. Unwell people are not allowed to donate until they have fully recovered. Donating stem cells will not make you weak or reduce your immunity. All the necessary health checks and tests are done beforehand and an independent specialist will assess you medically. Donor health is taken very seriously, so you can be sure you can save a life without risks to your own health! Following all hospital pandemic protocols will also be required.

  • You need to be aged 18 to 35 to be eligible to join, but you stay on the registry until you’re 60 years old.

    You can donate stem cells if you’re aged over 35, the age restrictions to join are due to making sure we keep our registry as young as possible for as long as possible!

    Funding is limited so it becomes really important that when we use up a “spot” on the registry (which costs money), that we fill those spots with young people who are the “ideal donor ” for better patient outcomes.

    Australia’s donor registry is lacking to the point we rely mostly on overseas donors. If we don’t focus on recruiting young people, then doctors will continue to choose younger overseas donors which is riskier for patients. Getting our donor pool up to scratch is the best thing we can do to help patients!

  • No, not if it’s still low when it’s time to donate. However if there is enough time, because iron is treatable, your medical team will treat the iron and increase it to an acceptable level for donation. Note that you can still join the registry through a cheek swab if your iron is low.

  • No, you cannot donate stem cells if you are pregnant. If you are trying to conceive you will need to let our partner Stem Cell Donors Australia know if you are called and identified as a match. Note you can technically still join through a mouth cheek swab if you are pregnant.

Other questions

  • No! It is the other markers in the blood that are more important for matching, in some cases the patient will even have a new blood type (your blood type) after the transplant!

  • There are lots of different markers in the blood that will determine if someone is your match or not. Your ethnic background plays an important role when looking at all of these markers and you are more likely to match someone who has a similar ethnicity or cultural background to you.  Your blood can be what’s called “tissue typed” to find out what its unique “code” is and this is what’s compared to the patient’s “tissue type” or "code” to see if there is a match.

    If the cells are not matched then they will attack the patient's body because they detect the organs as foreign and the patient would die - transplants are never done unless the right match has been found. 

  • These terms can be a bit confusing because they’re often used in different ways. In the past, people usually referred to transplants as a "Bone Marrow Transplant." But today, you’ll likely hear it called a “Stem Cell Transplant,” which is short for "Peripheral Blood Stem Cell Transplant" (PBSCT).

    This change is due to new tech and medicines that make it possible to get stem cells from the blood instead of directly from the bone marrow. In the past, stem cells could only be collected from the bone marrow itself, which is why it was called a "Bone Marrow Transplant."

    When stem cells are taken from the bloodstream they are referred to as “stem cells”, which are sent to a patient to have a “Stem Cell Transplant”. When stem cells are taken directly from the bone marrow they are referred to as “bone marrow”, which are sent to a patient to have a “Bone Marrow Transplant”.

    Stem cells can also be collected from an umbilical cord to be used in a “Cord Blood Transplant”.

    Even though these stem cells come from different places, they’re pretty much all the same!

  • Stem cells are the building blocks needed to create a new immune system

    Stem cells are the building blocks of the body. The stem cells from our bone marrow make up our immune system including white cells. These cells play an important role in our bodies including fighting off infections and disease.

    A new immune system can kill the cancer

    A person with blood cancer does not have a normal functioning immune system because it is allowing the cancer to live in their body. The idea of receiving someone else’s stem cells means that a new immune system can be formed which will hopefully detect the cancer and kill it.

    Stem cells can be used to cure over 70 different types of blood cancers and blood disorders.

    • The cancer patient will receive high dose chemotherapy that wipes out their own immune system so they will have zero white cells.

    • The stem cells from a healthy person (the donor) is then given so they find their way into the patient’s bone marrow to re-build a new immune system and fight the cancer.

    • Many people think that it’s a big operation or surgery for the patient receiving the transplant, but in fact the actual receiving of the stem cells is quite uneventful and similar to receiving a blood transfusion!

    • It’s the days and weeks after receiving the transplant that pose the biggest risk. After the transplant, a patient is given a combination of different drugs to help balance the effects of “graft vs host” disease.

    • The donor’s cells will detect the patient’s body and organs as foreign and will try to “attack”, but this is managed with special drugs.

    • You want some level of “attack” to happen as this is what essentially kills the cancer! But too much “attack” can have a deadly effect on the patient.

    • Over the weeks after the transplant, doctors do tests on the patient to assess what percentage of the cells are theirs versus the donor cells.

    • The first 100 days after the transplant is critical for the patient, whilst their immune system is rebuilding itself, they can become susceptible to infections, even the common cold can be deadly.

    • The 100 days is a big milestone and the percentage risk of major complications decreases after this point.

    • Eventually the patient adopts their donor’s immune system.

    • It is a long road to recovery and sometimes a lifetime of managing the long term side effects, but eventually many patients can go on to live a long and healthy life, all thanks to the incredible generosity of their donor who saved their life!

  • Blood cancer is a term that refers to cancers affecting the blood, bone marrow, and lymphatic system. Leukaemia, lymphoma, and myeloma are all blood cancers. There are many different subtypes of blood cancer. Blood cancer is one of the most commonly diagnosed cancers in Australia. There are no screening programs available and no way to prevent blood cancer through lifestyle changes. Learn more

Stats and facts

  • Every 28 minutes someone in Australia is diagnosed with blood cancer, and for many a blood stem cell transplant from a complete stranger is their only hope of survival.

    More than 110,000 Australians are living with blood cancer (and millions of people overseas).

    5,600+ people lose their lives every year in Australia, making blood cancer one of the biggest causes of cancer death.

  • About 1100 Australian patients initiate a search for a donor each year and about half proceed to a stem cell transplant.

  • ·Only 50% of searching patients will find a match within their family, the other 50% rely on finding a match with a total stranger who has joined the donor registry.

  • Unfortunately, Australian governments have been slow to support and fund “mouth cheek swab testing” as a method to join. Essentially, it was too difficult for people to join the registry and up until not that long ago, the only place a person could join was through Red Cross Lifeblood centres which came with a wide range of challenges for recruitment of stem cell donors. Overseas they have been using cheek swabs for over 20 years which is why they are so ahead!

    • 85% of Australian patients now depend on overseas stem cell donors. Other countries only rely on half of their donations to come from overseas. Using overseas donors is riskier for patients and also costs more.

    • The global donor pool has increased by 32%, unfortunately Australia’s donor pool has shrunk by 3.5%

    • Only 0.5% of the eligible Australian population (18-35 y.o.) are registered as donors. In comparison most other countries aim to recruit 2 to 3% of their population.

    • Overseas donors provide four times more donations to Aussie patients than Australian donors