Frequently Asked Questions (FAQs)
The Macedonian Donor Registry Foundation (MKDR) was established on 03.02.2002 as part of the ICGEB project (CRP/MAC03-01) “AMBIGUITIES RESOLUTION OF HLA GENOTYPES IN MACEDONIAN POPULATION”. On July 30, 2018, the Macedonian Donor Registry Foundation (MKDR) expanded its activities and changed its name to the Scientific Foundation SPIROSKI.
Most of the work of the foundation is publishing scientific journals, the most famous and extensive of which is the scientific journal Open Access Macedonian Journal of Medical Sciences. Following the name change, activities began for establishing a nongovernmental Marrow Donor Registry (in addition to the existing state Bone Marrow Donor Registry of the IIBHG at the Medical Faculty in Skopje) as an additional potential for treating patients with blood cancer with marrow transplantations.
Scientific Foundation SPIROSKI is founded on 03.02.2002 year
Scientific Foundation SPIROSKI is Registered in Central Registry for Foundations with UBIN: 5889243 and VAT: 4030004519877
Registered in Research Organization Registry
Scientific Foundation SPIROSKI – Marrow Donor Registry is SFS is registered with ION-2285 and WO-2117
Registered office: Rajko Zhinzifov No 48, 1000 Skopje, Republic of North Macedonia
Scientific Foundation SPIROSKI – Marrow Donor Registry is the foundation that makes lifesaving connections between people with blood cancer and incredible strangers ready to donate their stem cells. We’re saving lives right now. Three lives a day, in fact.
By growing the stem cell register, carrying out groundbreaking research and providing the best post-transplant care, we’re giving families a future.
But we can’t do it without you. Without you, there is no cure.
- If you’re aged 18–50, join our register, and become a potential lifesaver
- Give money or raise money to help fund our vital work from adding new donors to the register to enabling further research.
- Volunteer your time to help raise awareness, support patients and donors, or even deliver the lifesaving cells
Yes, we’re partly a charity. We are a foundation and mainly financially supported by the part of financial income of the Scientific Foundation SPIROSKI, but also rely on financial support from people and companies.
Our foundation number is 5889243 in the Republic of Macedonia.
We carefully invest in our work to maximise the benefit for our patients. This includes growing the stem cell register with the best possible donors, as well as funding and providing specialised services to support patients throughout their transplant journey.
A stem cell transplant can cure or improve the outcome for someone with blood cancer or blood disorder. In short, it can save their life.
When a person has a blood cancer or blood disorder, their blood cells have stopped working in their normal way. That means they can’t do vital things like fight infection or carry oxygen.
A transplant of blood stem cells from a healthy person can replace and repair these damaged cells – and hopefully cure their disease.
Blood stem cells are new, primitive blood cells made in the bone marrow, found in the centre of our large bones.
People aged 18–50 can join our register. Each time someone needs a donor, we look through our database for a match.
No, even with over 38 million people on the World Marrow Donor Association (WMDA), we urgently need to increase the size and diversity of potential donors. One day, we hope to help everyone who needs a lifesaving transplant.
To join our register, you have to be between 18 and 55 and in good health. You’ll stay on our register until you’re 61.
You need to be fully committed to donating your blood stem cells or bone marrow if you come up as a match.
The first step to joining the register is filling in a form and then doing a cheeky swab. If you apply online we can send you a swab pack in the post, or you can come along to one of our recruitment events in your local area. You then stay on the register until you’re 61, and we’ll be in touch if you’re ever a potentially lifesaving match for someone. If you have further questions please email email@example.com
We’re particularly keen to recruit more young men to our register, as they're more likely to be chosen to donate.
We also need more people from minority ethnic backgrounds to sign up to help give everyone an equal chance of finding a matching donor (Albanians, Roma, Vlaches, Turks, Bosnians and similar).
Young men aged 18–50 make up only 18% of the registries but provide over half of all donations. We need more young men to sign up as they're underrepresented - even though hospitals are much more likely to choose them to donate.
Yes. Your sexuality won’t stop you joining our register. You’ll be subject to the same rules as everyone else. Find out more on our join the register page.
Someone in need of a transplant is most likely to find a match in a person with a similar genetic history. That often means someone from the same ethnic background.
People from minority ethnic backgrounds often have rarer tissue types which makes it harder to find matching donors. That means we need to recruit even more donors from minority ethnic backgrounds, so they are overrepresented on the register.
This includes people Eastern European, Mediterranean and mixed-race backgrounds.
To be a donor you have to give what’s called ‘informed consent’. As stem cell donation is voluntary and not of direct benefit to the donor, a parent/guardian can’t give consent on behalf of a minor.
Young people are most likely to be chosen to donate as they are less likely to have long-term health problems which might delay or prevent donation.
Our research shows that donors aged 18–50 provide better outcomes for patients, so we focus our time, energy, and money on recruiting these potential donors. It costs 100€ to recruit each potential donor.
The welfare of our donors is a top priority for us. It’s our responsibility to keep our donors fully informed and make sure they understand the commitment they’re making by joining our register.
To fulfil this responsibility, we only allow people to join if they can understand our literature and give their consent in Macedonian, English, and Albanian language.
If potential donors don’t understand Macedonian, English, or Albanian language we can’t be sure they can give their informed consent if we ask them to donate. That would be a breach of our duty of care.
Don’t be disappointed – you can support us in lots of other ways.
It costs 100€ to recruit each person to our register, so funds are vital. You could raise money for us, donate money to us or take part in a fundraising event.
You can also encourage others to join our register, especially if they’re young men.
No, it won’t cost you anything. It does cost us 100€ to put each person on our register, though. And that’s why we continue to raise funds, so we can continue to grow our register.
If you’re a match and come to one of our collection centres in Skopje or surrounding countries to donate, we’ll pay all your expenses, including travel, hotel, food, and loss of earnings.
We have changed the way we collect donor’s tissue type from taking blood samples, to taking spit samples, to now asking people to do a cheek swab to join the stem cell register.
Whichever method you sign up by, you’ll be on our register in the same way and ready to potentially save someone's life. If you signed up before then there’s no need to sign up again.
They'll come back to Scientific Foundation SPIROSKI – Marrow Donor Registry and we find out your 'tissue type' to add your details to our register. Then every time someone needs a transplant, we'll compare their tissue type to yours - and to people on our register and registers across the world.
To find out more about how we work out your tissue type, head to The Science Behind Our Work.
Scientific Foundation SPIROSKI – Marrow Donor Registry [SFSMDR] works in the nongovernmental sector and Macedonian Bone Marrow Donor Registry [MBMDR] operates in governmental sector of the Republic of Macedonia.
All these organizations add their donors to a World Marrow Donor Associations [WMDA].
No, you only need to join one stem cell bone marrow register. All potential donors in the Republic of Macedonia are added to a single registry managed by World Marrow Donor Associations [WMDA]. Joining more than one would cause duplication and waste valuable resources.
Most people on our register never donate. Once you are on the register you have a 1 in 800 chance of being asked to donate in the next five years.
But your chance of being chosen to donate depends on your age and sex. A young man aged 18–50 has a 1 in 200 chance of being chosen to donate in the next five years.
We’ll only ask you to donate if you have a similar tissue type to someone in desperate need of a transplant.
If you’re a match and refuse, it could be devastating news for someone with a life-threatening illness. That’s why we ask you to be fully committed when you sign up.
You can donate your stem cells in two ways – through peripheral blood stem cell (PBSC) collection or bone marrow donation. Around 90% of people donate via PBSC collection. However, in some situations and for some conditions, a patient will need stem cells from bone marrow.
If you join our register, you must be willing to donate in either way.
On each of the four days before you donate, you will receive injections of granulocyte colony-stimulating factor (G-CSF). This is a naturally occurring hormone that increases the number of stem cells your body produces.
You’ll then come to one of our collection centers (in Skopje or surrounding countries), where a doctor will insert a tiny tube in your arm, draw out your blood, and pass it through a machine to collect the stem cells.
Donating only takes 4-5 hours for most people. At the end, a nurse will check how many stem cells you’ve donated. There is a chance that you’ll be asked to come back the next day to donate more.
You won’t need a general anesthetic or to stay in hospital overnight.
Side effects can include flu-like symptoms and aching. But they’re usually mild and last just a couple of days. You’ll receive lots of information and support for how to deal with them.
If you need to give cells from your bone marrow (found inside your large bones), doctors will give you a general anesthetic and draw the cells from your pelvis using a sterile needle and syringe.
You will need to stay in hospital for two nights if you donate bone marrow.
You’ll probably feel tired and have a little bruising after, but this generally passes within a week or so. You’ll receive lots of information and support for how to deal with them.
They could be anywhere in the world, but they are more likely to be in the Republic of Macedonia or surrounding countries.
We link with registers worldwide to find matches for people in the Republic of Macedonia and provide stem cells for people in need abroad.
Yes. We can search registers in countries around the world to find a match for someone in the Republic of Macedonia. That’s over 38 million potential donors.
Most of our donors and recipients never meet.
For two years after the procedure, donors and recipients can only contact each other through messages sent via our team. After two years, and only if the recipient instigates it, they can exchange contact details.
Some other registers and transplant centres don’t allow contact at all, or have different guidelines. So, if they’re involved in a transplant, donors and recipients may have to follow their rules.
We have strict rules so there can be no suggestion of a potential donor being coerced or induced to donate for financial or other reward. We also strongly believe in the importance of protecting the privacy of both the recipient and the donor.
No. It's highly unlikely that two friends will share the same genetic profile. The best hope for your friend is to find a donor on our register, or on another international register.
But if you’re 18–50 years old and in good health, you could join our register and potentially save someone’s life.
You can join our register by completing this form. Please mention that you’ve been tissue typed before.
We’d appreciate it if you could forward us a copy of your HLA tissue typing results by email to firstname.lastname@example.org .You should be able to get the tissue typing report from the hospital that did your testing.
If you have any questions, please do give us a call on 08000 8888.
If you donate, you'll be asked if you want to stay on our register and potentially donate again.
Although it’s unusual, some of our donors have donated more than once. We allow donors to give stem cells a maximum of four times.
Please visit the WWW.REDCROSS.ORG.MK for more information
Putting people on the register who are statistically unlikely to be selected is not only expensive but also diverts our scientists away from processing the samples of younger volunteers who are more likely to be selected. We will save more lives by ensuring that we have a register of people who are most likely to be selected by transplant clinicians. Also, we are proactively recruiting younger donors from minority ethnic backgrounds to increase the diversity of the register.
Yes, there are. You must be between 18 and 55 and in good health. Look at our join the register page.