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It's simple to join the Tobias Registry and only takes a few minutes. Sign up by filling out a short digital health form. Once you have answered the questions and filled in your contact details, we will send you a swab kit. You swab the inside of your cheek and send the swab back to us. The swab is analyzed to determine your unique profile (HLA type) which is stored in a secure database with us and is the value used later to match patients.

By being in the registry, you are searchable by patients all over the world. If you match with a patient, we will contact you about the next steps.

To join the Tobias registry, you need to be healthy, between 16-35 years old, live in Sweden and have a Swedish personal identity number, weigh at least 50 kg and have a BMI of maximum 40. Once you have registered, you could be matched with a patient anywhere in the world. You cannot sign up just to see if you match a specific individual. It is voluntary to be part of the Tobiasregistret and there is no cost to join.

By being part of the Tobias Registry, you can save lives. Every day, someone is affected by a life-threatening illness that can be treated with healthy blood stem cells. Blood stem cells from another person can thus save lives, but only if a matching donor is found.

The Tobias Registry needs to constantly grow with more donors to be able to help more people. About 30% do not find a suitable donor. Anyone can be affected, it could be someone's mother, child, or friend. What if it's you who can help by donating healthy blood stem cells? To find you, you need to be in our registry.

Many associate donation with something one can choose to do after death, but blood stem cells are something you donate while you are alive. The blood stem cells regenerate within a couple of weeks after the donation. By being part of the Tobias Registry, you could have the opportunity to save someone's life and experience the joy of it.

You can sign up for the Tobias Registry if you are between 16 and 35 years old and once you have joined, you remain in the registry until you turn 60 unless you contact us yourself and indicate that you want to leave.

The reason for the age limit is that young donors give patients the best chance of a good outcome. Therefore, young donors are selected more frequently.

It is always the patient's doctor who determines who is eligible for donation, so you can still be considered as a donor after 35, although the chances of finding a match decrease with age.

Are you over 35?

Then you can still help by spreading information about the Tobias Registry so that more young people get the chance to join.

Yes, if you are 16-17 years old.

At the beginning of 2025, the age limit to join the registry was lowered to 16 years. However, by law, you must be 18 years old to donate when it involves donating to someone you are not related to. This means that as a 16-year-old, you can register with the Tobias Registry – but you cannot become an eligible donor until your eighteenth birthday.

Once you join the registry, you will remain until you turn 60 years old.

The chance of being selected decreases with age, but you can still be contacted if you are the only match for a patient.

The chance of being selected as a donor is higher the younger you are because it has been shown to be the best for the patient. You will remain in the registry until you turn 60 years old in case a match comes up, unless you contact us yourself and inform us that you want to leave. If you haven't been contacted in the meantime, it's because you haven't been matched with anyone yet. However, new searches for patients are conducted in the registry every day, so a match could come up at any time.

You only register with the Tobias Registry once. Then you remain in the registry until you turn 60 years old, unless you contact us yourself and indicate that you want to leave.

If you haven't been contacted by us, it's because you haven't been matched with anyone. Searches for patients are made in the registry every day, so a match could appear at any time. The chance of being selected as a donor is higher the younger you are, as this has been shown to be best for the patient.

It is okay for you to swab yourself when you are temporarily ill.
Get well soon!

No, the swabs do not get old, but if you have swabs lying around at home, please send the swab kit to us as soon as you can.

You cannot sign up to save a specific person with stem cells, as the donor and recipient must have an exactly matching tissue type. Once you are registered, you will therefore be available to anyone in the world who needs this life-saving treatment.

In this way, one might save someone else's life – even if one cannot choose who.

If you have a relative who is ill and requires a stem cell donation, it is the hospital that investigates whether you can be a match — not the Tobias Registry or any other external organization. The registry is used to find unrelated donors for patients, i.e., voluntary donors without familial ties to the patient.

• I understand that joining the Tobias Registry is voluntary and that I can withdraw from the registry whenever I want without having to explain my decision
• I understand that when I have swabbed myself and sent in my saliva sample, I agree to the storage of the results
• I consent to my social security number being decoded and anonymized in the Tobias Registry system and this information being used in communication with other registries and healthcare providers
• I agree that if I am matched with a patient, I will be contacted for a request for blood sampling and further health screening
• I understand that it is voluntary to donate stem cells even though I register with the Tobias Registry
• I understand that I can be matched with, and become a potential donor for a patient in Sweden or abroad
• I consent to receive information from the Tobias Registry (option to unsubscribe is available)
• I have sufficient knowledge about what it means to be registered in the Tobias Registry

Right now, the registry consists of about 70% women and 30% men. This reduces the chances for some patients to find a good match. Therefore, it is especially important that more men sign up

Boys' stem cells may suit more patients, as they rarely have antibodies that women can develop during pregnancy. The amount of blood stem cells a person can donate, and that a patient needs, depends on body volume. The donor needs to be as big or bigger than the recipient, and men tend to have a higher body weight than women.

The more men who join, the more lives can be saved.

The chance of finding a suitable donor is greatest if one has a similar genetic background – often this means the same ethnic background.

For people from minority groups, it can be more difficult to find a match, as some tissue types are rarer. Therefore, it is especially important that more people with these backgrounds join the Tobias Registry.

Patients of non-European or mixed descent today have about a 10–30% chance of finding a matching donor, compared to a 70% likelihood generally.

Temporary illnesses such as colds or stomach flu are not a barrier to joining the Tobias Registry. However, some more serious illnesses are. The basic principle is that you should be healthy. If you are on long-term sick leave or have regular medical check-ups, you should not register.

The following diseases constitute a barrier to registration:

• Serious allergy that affects you in your daily life
• Autoimmune diseases that require treatment and monitoring:
  • Addison's disease, Fibromyalgia, MS, Rheumatism (Rheumatoid arthritis), Sjögren's syndrome, SLE, Severe psoriasis
• Connective tissue diseases
• Blood disease
• Cancer (current or past diagnosis)
• Diabetes (if insulin-dependent)
• Epilepsy (unless seizure-free for the last 12 months without medication)
• Hemophilia or other bleeding disorder
• Cardiovascular disease or previous heart surgery
• COPD/emphysema
• Pulmonary embolism or other thrombotic tendency
• Thalassemia or sickle cell disease
• Previously transplanted
• Tested positive for HIV, Hepatitis B or C, or HTLV

Contact us if you are still unsure whether you can register.
Email: info@tobiasregistret.se

Yes, it is fine to register with the Tobias Registry if you have ADHD.

It is fine to register with the Tobias Registry if you have mild allergies and/or asthma, as long as your condition is not an impediment in your daily life.

Migraine in itself and medications for migraine are not a barrier to becoming a donor, however, it depends on how often and how severe your migraines are.

A donation process is set up following specific dates that are very important to adhere to. If you become eligible for a donation and a date is scheduled for it, then there is a patient who has been pre-treated and is completely without their own immune system – thus entirely dependent on receiving your cells as planned for their survival.

If there's a risk that you then might not be able to come due to severe migraine, it could be directly life-threatening for your patient.

Om detta inte händer dig ofta, eller om du kan hindra anfall med hjälp av medicin så är det inget hinder för dig att bli givare och du kan bortse från detta när du fyller i anmälningsformuläret för att bli givare. Om det däremot händer dig regelbundet och det hindrar ditt liv så bör du inte anmäla dig som givare men kan istället bidra med att sprida information till andra och på så sätt få fler att anmäla sig som givare.

Yes, iron deficiency is not an obstacle to joining.

When donating stem cells, there are international rules to ensure the safety of both the donor and the patient.

• One can have a BMI (Body Mass Index) of up to 40. If it is higher, the risks increase, for example, if one is to be anesthetized for surgery or when harvesting stem cells through the blood.
• If you weigh less than 50 kg, it is more difficult to donate enough stem cells.

It is perfectly fine to join the registry even if you are pregnant, but you cannot donate during an ongoing pregnancy or while you might be breastfeeding.

Tattoos are fine: Having tattoos or other body art does not stop you from signing up to the Tobias Registry.

Of course! Join today.

It's difficult to specifically answer whether one can become a donor or not if they have a diagnosis within the autism spectrum as it is so individual.

A donation process can sometimes be protracted with several specific times to adhere to. It includes blood sampling, a thorough health examination with many health questions that you need to be able to answer.

You need to be able to make your own decisions without the help of, for example, parents or a guide, and also be able to lie completely still for about 5-6 hours during the actual donation process.

There are two ways to donate stem cells, and you need to be able to decide for yourself which way you think is best for you.

If you feel that this is something you could easily handle on your own, then there is nothing stopping you from being a donor.

Yes, you can register with the Tobias Registry even if you are taking lithium. If you are matched, a medical evaluation is carried out before any possible donation. If you are being treated with lithium, only donation via bone marrow can be considered. This is because donation via the blood requires treatment with the hormone G-CSF, which could risk disrupting the adjustment of your medication. To avoid jeopardizing your health or the stability of your treatment, bone marrow donation is therefore chosen as the donation method after medical assessment.

Yes, that’s fine. Supplements like creatine do not affect your ability to register.
If you become eligible for donation, it’s good if you let us know that you are taking creatine.

No, in order to join the Tobias Registry, you need to have BankID to identify yourself.

You must live in Sweden to join the Tobias Registry.

However, there are similar stem cell registries in many countries around the world. Find your country's registry here.

Yes, it is fine to register if you have a protected identity. When registering, you specify which address we should send your swab kit to, a home address or through the Swedish Tax Agency.

Blood-forming stem cells are found inside the bone marrow. There are two ways to collect stem cells from a donor, either through the blood or directly from the bone marrow. The most common method is to collect through the blood.

Read more at: If you are matched

A less common alternative is to use blood stem cells from umbilical cord units collected from newborns.

The day we contact you because someone needs your help, we will first ask if you are still interested and available to donate. Of course, you can say no.

If you wish to proceed, we will ask you to answer a health questionnaire and provide blood samples. These blood samples should be given at the nearest blood or healthcare center. The blood samples are sent to the patient's treating physician and thereafter it may take a few months before the hospital makes a decision. About 20% of all those who take this first step become candidates for donation.

If a donation becomes relevant, we will schedule you for a comprehensive health examination at one of our university hospitals in the country. Depending on where you live, this may include travel. The Tobias Registry assists with booking and will naturally cover all expenses.

The health examination is conducted to ensure that you are completely healthy and that there are no obstacles for you to donate. In connection with this, you will have the opportunity to speak with a doctor who will provide you with detailed information about what it means to donate and what will happen before and on the day of the donation itself. If you still feel willing and interested to donate, the planning will proceed, but it is entirely voluntary and you can also decline at this point if it doesn't feel right.

Have you been waiting long for a response from us?
Sometimes responses can be delayed if a donation is becoming relevant, or the patient's health condition may change. While you are being evaluated, you are reserved for the patient for three to four months. If three to four months have passed and no donation has been planned for the current patient, we will send information that you are searchable in the registry again.

Not everyone who is in the Tobias Registry will get the chance to donate stem cells, the important thing is to be in the registry in case someone needs you specifically. Each person in the registry increases the chances for the patients who are waiting for a matching donor.

It's impossible to say exactly what the odds are that you'll have the opportunity to donate, but if you happen to be someone's match, it's a unique occurrence and you could potentially save that person's life. A lot has to align before proceeding with investigating a potential donor. The chance of being selected as a donor is higher the younger you are, as this has been shown to be best for the patients.

Donating stem cells is completely voluntary! From the time you register until you might be contacted by us, several years can pass. By then, your life may have changed and for various reasons you no longer wish or are able to donate - in that case, it's just a matter of saying no. You have not committed to anything. However, what we do need is a prompt response, so we can pass the information on to the patient's treating physician.

If you accept but feel hesitant during the process, it's better to withdraw early rather than late. Before your donation, your patient is also prepared with harsh treatments to remove their own immune system. This is done so that your cells will not be rejected during the transplant. If you withdraw late in the process and the patient does not receive stem cells, there is a risk that this person may die.

No, you always donate at a university hospital in Sweden. Couriers collect the cells and travel to the country where the patient is.

No, you will be contacted if you have matched with a patient but you will not be informed of their identity.

Donating is always voluntary.

Generally speaking, no. If you have donated to a patient through the Tobias Registry, you are 'reserved' for that person. It may happen that the person relapses and needs a replenishment of stem cells - then you as a donor will be asked to donate again.

However, from a purely physical standpoint, there is nothing to prevent an additional donation since the body is constantly producing new stem cells.

No, you do not earn any money by donating stem cells – it is entirely voluntary.

Should you become eligible for donation, the Tobias Registry will assist with booking travel and any hotel stays. We also reimburse expenses for food and parking, etc.

Lost work income is compensated by the Social Insurance Agency, and the Tobias Registry assists you with the necessary forms.

For most religions, it is okay to donate stem cells, as it is often seen as a good deed because it involves saving lives. In short, virtually all major religions view stem cell donation as permissible and meaningful. According to, for example, British Board of Scholars and Imams (BBSI) it is believed that stem cell donation is allowed and considered a good deed.

If you are still unsure, it is wise to talk to someone you trust about religious matters to get guidance.

We understand that biological sex can be a sensitive issue. However, the patient’s doctor needs to have all medical facts about the donor before any potential donation, such as the donor’s biological sex at birth.

The most common method is to donate stem cells through the blood.

To do this, one needs to be treated for a few days before the donation by taking a medication that releases the stem cells into the bloodstream. This is done through injections in the abdomen.

Before the donation, one has to take injections with a substance called G-CSF. It resembles a substance that the body produces itself and causes the bone marrow to produce extra stem cells, which are then released into the blood.

The injections are taken for 4–5 days before the donation, usually in the stomach. Many may experience muscle pain, headaches, or feel tired, similar to when one has the flu. Painkillers such as Alvedon can help, and it usually subsides in conjunction with the donation.

When it's time to collect the stem cells, an apheresis machine is used. Blood flows from one arm into the machine, which extracts the stem cells and returns the rest of the blood to you through the other arm. It usually takes 4-6 hours and is typically done only once. In rare cases, a second visit may be necessary, about which you would be informed if needed.

G-CSF does not affect health in the long term, and the body recovers quickly afterwards.

Your contribution can save lives! You may need to take time off from work or school during the donation. We are here to support you all the way.

There are no known long-term risks associated with donating stem cells via the blood.

• 4–5 days before the donation, you need to take a natural body hormone called G-CSF by injection, usually in the stomach. Many people may experience muscle pain, headache, or feel tired, similar to having the flu. Painkillers such as Alvedon help, and the side effects disappear when you stop taking G-CSF.
• The donation itself usually takes between 4–6 hours (in rare cases it can take two days). Most often, stem cells are collected through thin tubes in the arms, but sometimes a thicker tube is needed, for example in the groin. It is common to get bruises where the needles were inserted. In rare cases, a tube in a larger blood vessel can carry a risk of bleeding or infection.
• During the collection, a substance is used to prevent the blood from clotting – it may feel like tingling in your body, but this passes immediately afterwards.

If you have an increased risk of certain inflammatory diseases, the hormone (G-CSF) can trigger this, and in that case bone marrow donation is recommended instead.

If you are eligible for donation and will donate through blood, you will receive injections of G-CSF prior to the donation, a substance that resembles the body's own growth protein. This causes the bone marrow to produce extra stem cells and release them into the blood.

The injections are taken once a day for 4–5 days prior to the donation, usually under the skin of the abdomen. You can administer them yourself or get assistance.

You may experience temporary side effects, such as muscle pain, headache, or fatigue. The same feeling in the body that one can have when having the flu. Symptoms usually subside within a few days.

G-CSF does not affect health in the long term and the body recovers quickly after the donation.

Bone marrow harvest means that stem cells are collected directly from the bone marrow. This is done in an operating room while you are under anesthesia.

You will be admitted to the hospital for 1-2 days. Doctors will extract bone marrow using syringes from the back part of the pelvic bone. The procedure itself takes about an hour.

Usually, you write in the day or evening before. You either stay overnight at the department or at a nearby hotel. After the donation, it's common to stay an extra night to ensure everything is okay. If you feel well, sometimes you can go home the same day, but the doctors will decide.

Afterwards, most people feel sore in the pelvic area. You may need to take painkillers and sometimes be off work for a few days. Since you lose blood during the donation, it is also recommended that you take iron supplements.

So, it's not the spinal cord that is being touched, but rather it's about the bone marrow.

We do everything to ensure that the risks are as small as possible for you as a donor. That's why our health check is so thorough – we want to be sure that you can handle the procedure. But it can never be completely risk-free.

Serious complications are very rare, but since a bone marrow harvest is a minor surgery, problems can sometimes occur, such as reactions to the anesthesia or an infection.

The technology used today is both safe and well-tested. Most people experience tenderness in the hip or lower back for a few days and make a full recovery within a week. Common over-the-counter pain relievers are usually sufficient. Some also feel a bit tired for a few days, but it varies from person to person.

The Tobias Registry will follow up with you until you are fully recovered. As a donor, you also always have the opportunity to call the hospital for medical advice even after the donation.

No. Bone marrow and spinal cord are not the same thing. Bone marrow is not collected from or near the spine or spinal cord, but from the iliac crests which are located above the gluteal muscles. Therefore, the donor's spinal cord cannot be damaged and there is no risk of paralysis.

Blood stem cells are the cells that form blood. They are located in the bone marrow, inside the bones. By giving a sick person new blood stem cells, they can form new, healthy bone marrow and new, healthy blood.

HLA antigens are like small markers, or ID tags on your cells. They show which HLA type you have – something you inherit from your parents.

There are many different variants, which can make it difficult to find the right match for a transplantation. The chance that you and a sibling have the same HLA type is about 25%, that is one in four.

DNA is like your entire genetic code – everything that makes you you.

HLA is a small part of the code that helps your immune system recognize what belongs to the body and what is foreign.

In an allogeneic stem cell transplantation, the stem cells are taken from a donor. The donor is either a family member, often a sibling, or an unrelated donor from a registry. The choice of donor is based on the HLA types of the patient and the donor.

In an autologous transplantation, stem cells are taken from the patient when the disease is in a quiescent phase, known as remission. They are returned to the patient after chemotherapy, sometimes combined with radiotherapy. This does not involve a donation from another person.

Nowadays, donors with either a better or worse match (so-called haploidentical transplantation) can be used with the patient, and the transplantation method is adapted accordingly. Donors for haplo are most often found within the family.

Stem cell transplants are performed to treat certain types of cancer or blood diseases. Currently, leukemia is the most common disease where blood stem cells are often used as a last resort.

There are many other diseases that can be treated in the same way, including severe anemia, immunodeficiency diseases, and metabolic disorders. In addition to leukemia, examples of cancers treated with stem cell transplantation include lymphoma and myeloma.

Currently, a stem cell transplant can be potentially life-saving for around 70 different diseases.

Most blood stem cells intended for transplantation to a patient are used the next day when they are fresh (they need to be administered within 72 hours). It is also possible to freeze blood stem cells at very low temperatures (-140 degrees) and store them for years. If more blood stem cells are collected during a donation than what is needed for the patient, the excess cells are saved frozen in case the same patient requires more cells from their donor. The donor then does not need to donate again.

As soon as the blood stem cells have been checked, labeled, and packaged, they are transported by a courier in special containers that maintain an optimal temperature directly to the hospital where the patient is located. In exceptional cases, they are frozen before transportation, for example, if there is a long journey to the patient's hospital in another part of the world.

Umbilical cord blood contains stem cells that can be used for certain patients in transplantation. The Tobias Registry collaborates with the National Biobank for umbilical cord blood at Sahlgrenska in Gothenburg. Thanks to the collaboration, the biobank's units are registered in the Tobias Registry database – and thus become searchable for the whole world.

However: umbilical cord blood is not always the best option for all patients.

The Swedish National Umbilical Cord Blood Bank was established in 2006 and is located at Sahlgrenska. It is open to everyone in the world, operates entirely non-profit, and is funded by the regions in collaboration with the Children's Cancer Foundation. Moreover, the biobank is internationally approved and accredited by FACT (Foundation for the Accreditation of Cellular Therapy)

DLI stands for donor lymphocyte infusion. It is a treatment given after a stem cell transplant from a donor. In a DLI, the patient receives T-cells (lymphocytes) from the same donor who provided the stem cells earlier.

DLI is used to assist the patient's immune system in fighting the disease again, for instance if the cancer or leukemia returns and/or to strengthen the donor's cells in the body, if they have not taken sufficiently well after the transplantation.

A DLI is carried out in the same way as a donation of blood stem cells but generally, one does not need to be stimulated with the hormone that is otherwise required for a first donation. Depending on how much time has passed since the first donation, a new health assessment may be needed.

There are no known long-term side effects of donating stem cells.

Yes, you can continue to exercise as usual while you are enrolled in the registry.

Have we contacted you as a potential donor?

If you're going to donate, we recommend that you avoid prolonged sitting and activities that may involve violence to the abdomen (e.g., ball sports/kickboxing) the week before and after donation.

The patient and donor are anonymous to each other.

After a year, you may sometimes receive an update about your patient, but the rules vary between different countries and it's not certain we will get a response. Contact the Tobias Registry if you want us to reach out with the question to the patient's hospital.

You can always write anonymous greetings to your patient through the Tobias Registry. The letters are reviewed to ensure that no names or places are revealed. Sometimes you get a response, and it happens that donors and patients exchange letters in this way.

After at least one year, in some countries, it may be possible to make direct contact if both you and the patient wish and sign a consent form. The rules vary greatly between different countries – in some, confidentiality is never completely removed, while in others it can happen after 1–5 years.

One can always write messages to the patient. These letters should be completely anonymous and will be censored if there is any personal information or anything else that can identify a person. The Tobias Registry will convey your greeting to the patient's hospital for forwarding to your patient. Hopefully, you will receive a response from your patient, and it happens that donors and patients exchange letters with each other in this way. Of course, it also happens that the patient wants to contact their donor, and in that case, we will forward this to you.

After a certain period of time has passed (at least one year), there is sometimes the possibility to waive confidentiality so that direct contact can be made between parties, if both agree. Both parties must then sign a consent for this, where they also choose which information they wish to disclose. Different countries have very different rules regarding this, and we always comply with the restrictions of your patient's country. Some countries never approve confidentiality waivers, while others may approve it after a certain number of years, usually between 1 – 5 years.

After you have donated stem cells, the Tobias Registry follows up on how you are doing. We assist you if you have any questions or need support after the donation.

Follow-up on all donors
One year, five years, and ten years after the donation, you will be asked to answer a short survey about your physical and mental health. The same type of questions is asked of everyone who has donated around the world.

Sometimes a patient may need a second donation from the same donor. This may be because the first transplant did not fully take, the disease has returned, or the patient needs extra support for their blood cells to form properly.

As a donor, you can contribute in different ways, depending on what the doctor considers best. Sometimes only certain white blood cells (lymphocytes) from the donor are given, known as DLI. A DLI can help strengthen the patient’s immune system and fight the disease without the need for a full stem cell transplant. Sometimes a second donation of stem cells is requested. The doctor makes an individual assessment of which method is best for the patient.

If you have donated through the Tobias Registry, you will no longer be searchable for any additional patient. Physically, however, there is nothing preventing another donation, since the body is constantly producing new stem cells.

It is always voluntary to donate stem cells.

The Tobiasregistret is the Swedish registry for donors of blood stem cells. The registry was established in 1992 by the parents of Tobias Storch, who passed away at the age of 17 while waiting for a suitable donor. The Tobiasregistret matches patients with appropriate donors in Sweden or abroad.

The Tobias Registry was established in 1992 by the parents of Tobias Storch. Tobias passed away at the age of 17 following a severe blood disease, and at that time there was no registry in Sweden to find donors.

Today, the Tobias Registry matches patients with suitable blood stem cell donors in Sweden and abroad, and since its inception, thousands of lives have been saved thanks to the registry.

The Tobias Registry is a non-profit operation with a national mandate for Swedish healthcare. The registry is managed by the Stockholm Region and receives financial support from all of Sweden's regions, which contribute based on their population size.

Currently, there are just over 273,000 registered donors in the Tobias Registry.

Right now, the registry consists of about 70% women and 30% men. This reduces the chances for some patients to find a good match. Therefore, it is especially important that more men sign up

Boys' stem cells may suit more patients, as they rarely have antibodies that women can develop during pregnancy. The amount of blood stem cells a person can donate, and that a patient needs, depends on body volume. The donor needs to be as big or bigger than the recipient, and men tend to have a higher body weight than women.

The more men who join, the more lives can be saved.

Yes, blood donation centers have their own registries, and one is not automatically enrolled in the Tobias Registry when becoming a blood donor. It is also not possible to store blood stem cells in the same way as blood is stored.

No, regardless of the country the patient you match with lives in, they can find you through our interconnected systems. You donate in the country you live in, and then couriers are used to transport your cells to the patient's hospital.

Approximately 300 allogeneic (where the patient receives stem cells from another person) stem cell transplants are performed in Sweden each year. About 250 of these are transplanted with an unrelated donor from Sweden or a voluntary donor from somewhere else in the world.

The majority of those in need of a stem cell transplant do not have a suitable donor within the family and need to find an unrelated donor.

In all the world's registries, there are currently over 43 million potential donors. All 43 million donors are available to patients worldwide. Tobias Registry is one of just over 100 registries around the world.

Each registry should recruit as many as possible to contribute to international cooperation and take joint responsibility for saving lives regardless of country of birth.

Log in to My Pages and update your contact details there!

The best way to support the Tobias Registry is by encouraging more people to join. If you want to support financially, you can make a donation via Swish or bank transfer.

More information is available here.

We use your contact details to reach you if you become a match for a patient and to send out information and news updates from the Tobias Registry.

Information about tissue type, blood group, sex, and date of birth is used to find a suitable stem cell donor for a patient and for monitoring
the registry as a whole. Personal data is not used in a way that an individual donor can be identified, instead they are identified by donor code, never by name or social security number. Only staff at the Tobias Registry have access to the link between personal data and code.

Please see the Privacy Policy about the use of personal data..

Try logging in to My Pages to find out if you are included in the Tobias Registry, where you can also see which date you enrolled.

The Donations Register applies to organ and tissue donation after death and is managed by the National Board of Health and Welfare. The register for stem cell donors, Tobiasregistret, applies to living donations of blood stem cells to severely ill patients. Thus, there are two different registers with different purposes, and one needs to actively sign up for both.

Join Tobiasregistret here.

Register for the Nation Donor Registry here.

Yes, we are grateful for everyone who volunteers for the Tobias Registry.

As a volunteer, you help us spread the word about the Tobias Registry and the importance of signing up. Your main task as a volunteer is to disseminate information and inspire. We are primarily looking for individuals between the ages of 16 and 35 as they are also our main target group for donors. We will announce when the next application period opens on our website and social media - stay tuned!

For questions email: volontar.tobiasregistret@regionstockholm.se

Email info@tobiasregistret.se and we will help you further.

See the Privacy Policy for how the Tobias Registry manages your information.

Your daily life is not affected by being part of the Tobias Registry.

If you have matched with a patient and choose to continue in the process, it may affect your daily life in the sense that you will need to take time for blood tests and a medical examination, for example. The Tobias Registry will help plan and schedule these at times that suit you. If we have contacted you as a potential donor, we recommend that you avoid prolonged sitting and activities that may involve impact to the abdomen (e.g., ball sports/kickboxing) for four days before and for the week after your donation.

If you have been tested for a relative but didn't match, there's no problem in signing up as a donor in the Tobias Registry. If you are under 35, you can sign up via the link and we will send a swab kit to your home. If you are over 35 and thus have passed our upper age limit, we can register you with the HLA value that already exists for you. Contact the Tobias Registry for more information at info@tobiasregistret.se.

If you have donated to a relative, you can register, but we need that information from you at the time of registration. Please contact us by email or phone once your registration is complete so we can make a note of this on your profile.

The majority of those registered in the Tobias Registry are 26-35 years old. We constantly need to recruit new, young donors to be able to help sick patients in need of a stem cell donor.

Here are instructions for healthcare providers before taking a blood sample from a donor being evaluated for a potential stem cell donation.

If any uncertainties arise, you are welcome to contact us.

Sampling Instructions

• The Tobias Registry provides you with a referral, test tubes, and additional information prior to the sampling.
• All samples are taken by the donor.
• An ID check of the donor should be performed

The investigation is anonymized

• The test tubes are labeled with codes because the recipient of the samples should not be informed of the donor's identity (exception; EDTA tubes for blood typing).
• The codes on the tubes are checked against the attached documentation.

Sample transport

• The samples are returned to the Tobias Registry via PostNord Express, which is arranged by the donor.
• Use the attached protective sleeves and transport bags.

Cost

• The donor should not pay for this sampling.
• An invoice may be sent to the Tobias Registry.

Yes, that is possible. For instance, it may be necessary if one is pregnant, as you cannot donate then. It might also be wise to pause if one is moving abroad for an extended period, since you need to be a resident in Sweden to be able to donate.

To pause your account, go to My Pages and click on "My Information".

No, but you need to contact us so we can update your personal details.

Your DNA is used to perform two genetic analyses: an analysis of your blood type and your HLA value. No other analyses or mapping of your DNA are carried out. After a few weeks, when the analyses are complete, your DNA and your swabs are discarded. The lab cannot link your swabs to you personally, but instead performs analyses connected to the Tobias Registry code with which the swabs are labeled.