Dear Sirs and Madams!
We are glad to greet You at the website of the Karelian Registry of unrelated donors of hematopoietic stem cells. Since the name of our organization is long and difficult we will try to explain it.
The Karelian Registry of unrelated donors of hematopoietic stem cells is an organization recruiting volunteer adults who are ready if necessary to become a donor of cells which serve as a source of all blood cells for transplantation to patients without related donors. These people used to be called «bone marrow donors». But now these cells may be obtained from both bone marrow and blood so their modern name is «donors of hematopoietic stem cells», or «donors of hematoplastic cells».
The word «Karelian» means that the Registry is located in the Republic of Karelia (North-West of Russia), i.e. in Petrozavodsk, it’s capital.
What are the purposes of our Registry?
The malignant blood disease (so-called leukemia) is a problem of big importance. This pathology affects thousands, both children and adults. But it is no longer a death sentence. The transplantation of hematopoietic stem cells may often save the patient.
The fact is that the presence of a donor who is ready to donate his/her hematopoietic stem cells is a necessary condition for the successful allogenic (i.e. from the other person) transplantation to the patient suffering from the severe blood illness. A natural relation may serve as a donor but unfortunately only 30% patients have a compatible related one. In other cases only an unrelated donor of hematopoietic stem cells can help. The search for these people is performed by special Registries worldwide. The first Russian Registry was created in Saint-Petersburg in 2000. The Karelian Registry was founded in 2001 as a result of close cooperation between the hematologists of the Republican V.A. Baranov hospital (Petrozavodsk), Olga Marinets (MD, Saint-Petersburg), Igor Blau (MD, Berlin) and the Stefan Morsch Fund (Germany). The first campaign for recruiting of prospective donors of hematopoietic stem cells was conducted on April 28, 2001 in the Republican hospital (Petrozavodsk) which is the birthday of our Registry. We thank our friends Olga Marinets and Igor Blau for their continuous maintaining of Karelian Registry and advocating of the hematopoietic stem cell donation in Russia. Their assistance and the support of the Stefan Morsch Fund have made it possible to perform the unrelated marrow transplantation from a German donor to a Karelian patient in 2003. In May, 2004 for the first time in Russia two unrelated hematopoietic stem cells transplantations from the Karelian Registry donors to the patients with acute leukemia were performed in the academician I.P. Pavlov Saint-Petersburg State Medical University.
But there is a marked deficiency of such Registries in Russia and the quantity of potential donors is very small. Therefore today most transplantations in Russia are performed from foreign donors which is a very expensive procedure. The so-called «activation» of the foreign donor (search for him/her, hematopoietic stem cell harvest and its’ transportation) costs on average 15000 Euro. What can we do about this? It is necessary to create our own system of Russian Registries. The Karelian Registry of unrelated donors of hematopoietic stem cells takes an active part in this work. Today our main objective is the recruitment of as many as possible new potential donors. Unfortunately we do not receive any help from our state. There is no Federal program creating and developing Registries in Russia. That’s why in October, 2004 the Charity Fund «Karelian Registry of unrelated donors of hematopoietic stem cells» was established. The main purpose of the Fund is the collection of money for the development of the Karelian Registry. The latter exists only owing to private donations. The financial resources are used for the recruitment of new donors, laboratory and medical examinations of donors and current Registry activity. Today the Karelian Registry is known both in Russia and abroad.
Since 2006 the Karelian Registry is the member of World Marrow Donor Association (WMDA), and since 2007 is the member of Bone Marrow Donors Worldwide (BMDW). And in the March 2011 the Karelian Registry was registered with U.S. Food And Drug Administration (FDA). Today the Karelian Registry is known both in Russia and abroad.
At our web-site You can find information about the process of donation, campaigns for recruiting new donors, current activity of the Registry, etc.
You may contact us at the Guest page or by e-mail and ask any questions or express Your opinion.
Yuri Ioffe – Head of the charity fund «Karelian Registry of unrelated donors of hematopoietic stem cells»