STEM CELL DONORS COALITION (SCDC)

CALL FOR MEMBERSHIP

The foundation Macedonian Donor Registry (MKDR) was founded on February 3, 2002 as part of the ICGEB project (CRP/MAC03-01). On July 30, 2018, the foundation Macedonian Donor Registry expanded its activities and changed its name to Scientific foundation SPIROSKI. The biggest part of the work of the foundation is publishing of scientific journals, of which the most famous and the most extensive is the scientific journal Open Access Macedonian Journal of Medical Sciences (OAMJMS).

After the name change, began activities to create a non-governmental Donor Registry for stem cells (in addition to the already existing state donor registry for bone marrow of IIBHG) as an additional potential for treating blood cancer patients with bone marrow transplantation. Civica Mobilitas has accepted to finance the SFS project – PROMOTIONAL PROGRAM FOR STEM CELL DONATION. The aim of this project is to involve the non-governmental sector in raising awareness about stem cell donation as well as registering stem cell donors. The project does not finance the genetic tests and other tests of stem cell donors, as well as the necessary specific software for the full functioning of the Stem Cell Donor Registry, but is financed from the funds of the Scientific Foundation SPIROSKI, from projects, from donations and from other sources.

Inclusion of regular and associate members in the STEM CELL DONORS COALITION (SCDC) will speed up and significantly increase the number of stem cell donors. We invite you to join this coalition, which we will finance, and you will contribute to increase the number of stem cell donors, and treatment of patients with malignant blood diseases.

Contact person: MD Emilija Andonoska, head of the Stem Cell Donors Coalition (SCDC), e-mail: emilija.andonoska@sfsmdr.mk

The Call, Membership Forms along with Terms and Conditions for Membership can be found attached below:

The completed form and the electronic attachments should be sent to the address Scientific Foundation SPIROSKI, Rajko Zhinzifov no. 48, Skopje or by e-mail: mirko.spiroski@sfsmdr.mk, ivo.spiroski@sfsmdr.mk, or emilija.andonoska@sfsmdr.mk

MEMBERSHIP INFORMATION

The Marrow Donor Registry (Donor Center) consists of: Stem Cell Donors, Stem Cell Donors Coalition (SCDC) and Stem Cell Laboratory (Histogenetics, USA). The coalition consists of: regular members from non-governmental organizations (Recruitment Centers), members from supporting non-governmental organizations, informal groups from the non-governmental sector and supporting individuals who jointly provide voluntary donors for stem cells in Macedonia and in countries where there are citizens from Macedonia (Figure 1).

Figure 1: Scheme of the structural units of the Stem Cell Donors Coalition (SCDC)

AIM

The aim of this coalition is to involve the non-governmental sector in raising the awareness about stem cell donors as well as registering stem cell donors through the SFS – Marrow donor registry.

It is expected to be created a network of: donors, NGO regular members (recruitment centers), NGO member supporters, NGO informal groups and individual supporters who will carry out education and registration, and later can be involved in taking swab samples for HLA analysis and other molecular analyses.

The inclusion of the non-governmental sector in the Stem Cell Donors Coalition (SCDC), in addition to the existing state registry, will increase the chances of patients with malignant diseases in the country and abroad for a bigger number of paired patients with suitable marrow donors and their successful treatment.

CONDITIONS OF MEMBERSHIP

Conditions for membership in the Stem Cell Donors Coalition (SCDC) are:

  • to have education for youth in its work program;
  • to accept the aims of the SFS – Marrow donor registry;

OBLIGATIONS OF MEMBERSHIP

Obligations of the Donor Center (SFS –Stem Cells Donor Registry)

 

The donor center is an organization responsible for recruiting donors, providing consent, testing, managing and collecting personal data from the donor, his genetic and medical data. The stem cell donation center at the Scientific Foundation SPIROSKI undertakes to fulfill the following tasks:

  • to prepare printed and electronic materials for affirmation of stem cell donors;
  • to organize the non-governmental organizations in the affirmation of stem cell donors and saving lives through the Stem Cell Donors Coalition (SCDC) (Recruitment Centers);
  • to provide buccal swab kits and other necessary sampling materials;
  • to organize actions for stem cell donors independently and in cooperation with non-governmental organizations through the Stem Cell Donors Coalition [SCDC];
  • to perform HLA genotyping in accredited laboratories;
  • to search for suitable stem cell donors (Search Unit);
  • to maintain a Registry for stem cell donors;
  • to store data from stem cell donors in the World Marrow Donor Association (World Marrow Donor Registry = WMDA);
  • to finance programs for stem cell donors in the regular and associate members of the Stem Cell Donors Coalition (SCDC);
  • to finance part of the costs for donors and recipients of stem cells.

Obligations of the Recruitment Center (Member of the Stem Cell Donors Coalition (SCDC))

 

The recruitment center is a functional unit within an NGO or an informal group that educates, organizes and samples potential stem cell donors for genetic and other testing. The recruitment center undertakes to fulfill the following tasks:

  • to prepare a working Program for the Stem Cell Donors Coalition (SCDC) and submit it to the SFS – Stem Cells Donor Registry;
  • to work on raising awareness of the need for stem cell donors;
  • to organize stem cell donation actions;
  • to collect buccal swab samples from donors and send them to the SFS – Stem Cell Donor Registry.

BENEFIT OF MEMBERSHIP

Members of the Stem Cell Donors Coalition (SCDC) acquire the following rights with regular or associative membership:

  • to receive and use information from the SFS – Stem Cells Donor Registry;
  • to receive and use printed or electronic materials from the SFS – Stem Cells Donor Registry;
  • to receive and use buccal swab kits for stem cell donors;
  • to be funded by the SFS – Stem Cell Donor Registry for its adopted stem cell donor programs.

STRUCTURE

The process of formation of the Stem Cell Donors Coalition (SCDC) is led by the SFS – Marrow donor registry until the formation of the Management Board (Board), which will monitor the work of the Stem Cell Donors Coalition (SCDC) and the Board will report regularly about progress.

Permanent members of the Board of Directors will be elected members from the SFS – Marrow donor registry and one member of each regular member.

The Association members enjoy the same benefits as Regular members from the NGOs, but without the right to propose a member for the Board of Directors and without the right to vote, but they will be included in meetings, through discussions, giving their own proposals and ideas for activities, projects, collaborations etc.

Figure 2: Structure of the Recruitment Centres in the non-governmental sector as part of the Stem Cell Donors Coalition (SCDC)

Regular members