You are needed. Right now.
Every day, someone is affected by a blood disease so serious that the only chance of survival is to receive healthy stem cells from a donor. By joining the Tobias Registry, you could be the person who gives someone that chance.
You can join if you are between 16-35 years old. It costs nothing to register, but it can mean everything to someone who is waiting.
Below you can read more about how to join and what happens next.
Here's how you join
Sign up and receive a swab kit to your home
Once you have registered, you will be sent two swabs and information to your home address.
Swab the inside of your cheeks
Instructions on how to do it are included with the letter, but it's very simple.
Send back the swabs
Place the swab kit in the return envelope, and send it back. The postage is already paid. Once you have sent back your swabs, they will be analyzed to determine your tissue type.
What happens next?
As a registered individual, you are included in searches that are conducted daily for patients. You could be matched with someone anywhere in the world. It could happen now or later on. However, the vast majority never get a match.
If you do get matched, we will contact you via phone, text, and email to inform you. Donating stem cells is voluntary and it is okay to say no without giving a reason.
If you get a match, your healthy stem cells could save the life of someone's sick mother, father, friend, or sibling – but it also requires a bit of effort from you to prepare and carry out the donation.
It's completely voluntary and you can say no at any time.
If you choose to proceed, we will ask you to provide a blood sample within a few weeks to ensure a complete match with your patient's HLA type. You can give the blood sample at the nearest blood center or healthcare center, and we will assist you in scheduling an appointment.
Approximately one in five goes all the way to donation.
If the donation is made, we will schedule a health examination at a university hospital. There you will also meet a doctor who will tell you more about the donation and the two ways you can donate.
Sometimes it may take a while before we know if the donation will take place or the patient's situation and health condition may change. During the investigation, you will therefore be reserved for the patient for 3–4 months. After that, you will be searchable in the registry again if the donation has not occurred.
Before a blood donation, you need to take a naturally occurring hormone for 4 days prior to the donation so that the stem cells are released into the bloodstream. The hormone is called G-CSF and is administered with a syringe in the stomach. You can inject it yourself or get help with this. A common side effect is flu-like symptoms such as body aches and a feverish feeling, which usually subsides as soon as you donate.
If one donates through bone marrow, one does not need to take these injections.
If you donate via the blood you will have tubes in both arms at the hospital while a machine collects the amount of stem cells needed. This takes about 4–6 hours; in rare cases an extra day is needed.
During the donation you may feel tingling in your fingers or around your mouth; this is harmless and usually goes away when calcium is given. Serious side effects are extremely rare, but avoid hard blows to the stomach and long periods of sitting still for a week before and after the donation. Contact the hospital’s donation center immediately if you experience pain or swelling in your abdomen.
Expect to need time off from work or school on the day of the donation and potentially the surrounding days. You will be compensated for any loss of earnings from work during these days.
In bone marrow donation stem cells are collected directly from the bone marrow under general anesthesia at the hospital. Doctors collect bone marrow with syringes from the iliac crest, in the back part of the pelvis. The procedure itself takes about an hour. You are admitted the day before and stay overnight at the hospital or a hotel, and you often stay an extra night so they can make sure you are feeling well. If everything looks good, you can sometimes go home the same day as the donation.
Afterwards, many people describe their pelvis/lower back as feeling tender and painful, but this is temporary. Painkillers can help relieve the pain, and you may also need a few days of sick leave.
After your donation, the Tobias Registry will contact you to inquire about your well-being and to hear about your experience of the process. We will call you in the days following the donation. We will also reach out to you via email approximately one year, five years, and ten years after the donation to conduct a more long-term follow-up.