The purpose of this project is to involve the non-governmental sector in raising awareness for marrow donation as well as registration of marrow donors through the Marrow Donation Program at the Scientific Foundation SPIROSKI.
It is expected to create a network of recruitment centers that will perform education and registration, and may later be involved in sampling the cheek for analysis. The involvement of the non-governmental sector in the donation of marrow, in addition to the existing state registry, will increase the chances of patients with malignant diseases in the country and abroad for a larger number of patients with appropriate marrow donors and their successful treatment. The first step in this project is to create a web portal of the Marrow Donation Program in English in compliance with the standards and recommendations of the World Association of Marrow Donors (WMDA) as well as compliance with the legal provisions of the existing law on taking and transplanting human body parts for treatment. After the completion of the web portal, its content will be translated into Macedonian and Albanian. Materials will be printed and electronic attachments will be prepared for organizing donation actions.
A public discussion for marrow donation will be organized in the non-governmental and governmental sector. During the next 15 months, donation actions will be organized by the two partner student organizations on the entire territory of the country by signing standardized consent forms. Donation actions will be realized among Macedonian citizens aged 18-60, with special attention to the inclusion of donors from the communities (Albanians, Roma, Vlachs and others). Their data will be stored in a marrow donor database. Collection of swab samples will be performed in this project after the public discussion. Expected results from this project are:
With the establishment of SFS – MARROW DONOR PROGRAM will be achieved one of the goals of the Scientific Foundation SPIROSKI, which together with the publication of scientific journals provides scientific research in the field of the main tissue-compatible complex and transplantation of cells, tissues and organs. The results will be used by patients who are indicated for stem cell treatment in our country, in neighboring countries and around the world. Involvement of medical students from Skopje and Stip, and through them the other student organizations throughout the country, will enable raising awareness of the need for bone marrow donation and bone marrow transplantation.
The SFS – MARROW DONOR PROGRAM project will not fund genetic and other testing of marrow donors, as well as the necessary specific software for the full functioning of the Marrow Donor Registry, but will be funded by the Scientific Foundation SPIROSKI, from projects, donations and other sources.
The NG marrow donor alliance [NGMDA] is a functional organization composed of the SFS – Marrow Donor Registry (Donation Center) and members of NGOs and informal groups (Recruitment Centers) that jointly provide voluntary marrow donors in Macedonia and the countries where there are Macedonian citizens.
Goals
The purpose of this project is to involve the non-governmental sector in raising awareness about marrow donors as well as registering marrow donors through the Marrow Donor Promotion Program at the Scientific Foundation SPIROSKI.
A network of recruiting centers is expected to be set up to provide education and registration, and may later be involved in swab sampling for HLA analysis.
The inclusion of the non-governmental sector in the marrow donation, in addition to the existing state registry, will increase the chances of patients with malignant diseases in the country and abroad for a larger number of paired patients with appropriate marrow donors and their successful treatment.
Membership requirements
The Conditions for membership in the Non-Governmental Alliance for Marrow Donors are:
Membership obligations
Obligations of the Donor Center (SFS – Marrow Donor Registry)
The Donor Center is an organization responsible for recruiting donors, obtaining consents, testing, managing and collecting personal data from the donor, his genetic and medical data. The Marrow Donation Center at the Science Foundation SPIROSKI is committed to fulfilling the following tasks:
Structure
The process of forming a Non-Governmental Alliance for Marrow Donors is led by the SFS – Marrow Donor Registry until the establishment of the Management Board (MB) which will monitor the work of the Non-Governmental Marrow Donor Alliance and will regularly report on progress.
Permanent members of the Board will be elected members of the SFS – Marrow Donor Registry and one member from the regular members.
Associate members enjoy the same benefits as regular members of civil society organizations, but without the right to propose a member of the Board and without the right to vote, and will be involved in meetings,discussions, giving their suggestions and ideas for activities, projects , collaborations etc.
Registration
Contact: Ana Vucurevic, Head of SFS – Marrow Donor Registry, e-mail: ana.vucurevic97@yahoo.com
The аppeal, Membership Forms along with the Terms and Conditions for membership, can be found attached below:
The completed form and electronic attachments should be sent to the Scientific Foundation SPIROSKI address, Rajko Zinzifov no. 48, Skopje or by e-mail mspiroski@yahoo.com, ivospiroski@gmail.com, or ana.vucurevic97@yahoo.com
Members of the Marrow Donation Platform
Scientific Foundation SPIROSKI is a signatory of the Civil Society Code from 2021.
The Civil Society Code aims to strengthen the system of self-regulation and to contribute to greater professionalism and accountability. One of the biggest challenges we face today is building trust with the citizens and the general public. As civil society organizations that operate at the local and national level, we need to ensure broader accountability for our work and thus confirm our public interest in the policy-making processes that are of interest to citizens, for which we receive resources. This Code is voluntary, and every civil society organization that joins it assumes responsibility for respecting and practicing the commitments, values and standards set out in it. The Code is a living matter and will be promoted and promoted by civil society organizations consistently and continuously.
The preparation of this Code of Civil Society Organizations emerged as an initiative of the organizations that are part of the informal network for transparency and accountability of civil society organizations that was established within the program “Sustainable Civil Society – State Financing of CSOs”.
Within this program, 29 re-grants were realized to improve transparency and accountability. And grantees as a critical mass of civic associations working to improve their transparency and accountability were the basis for forming the network. Additionally, organizations that already cover the topic and
work in the field of good governance and self-regulation have joined the network.
Fifty-one CSOs have already signed up, and any interested organizations wishing to access the Code will be able to do so by completing the following statement. The statements are deposited in the Macedonian Center for International Cooperation at the following email: asv@mcms.mk and are considered by the signatory organizations as part of an informal network for transparency and accountability of civil society organizations.
CSOs that will access the Code need to report on the implementation of the Code in their annual organizational reports, announce on their social media. The next steps for the development of the Code are the establishment of a mechanism for monitoring the implementation of the Code after it is promoted and shared with the wider civil society.
An explanation for our scientific work
How we fund our research
Most of the financing of the SFS – Marrow Donor Registry is covered by the funds of the Scientific Foundation SPIROSKI intended for financing this registry. A significant part of the funds for 2021 and 2022 are covered by the project of Civica Mobilitas SFS – MARROW DONOR PROGRAM [SFS-MDP]. This program provides funds for both partners Association of Citizens Macedonian Medical Student Association – MMSA, Skopje and Student Organized Medical Association SOMA, Stip. The smallest part of the financing is realized by donating money through the donor telephones and through the website of the donor registry.
The strategic determination of SFS – Marrow Donor Registry is to ensure self-sustainability in financing through money donations and through scientific projects with a significant reduction in funding from the Science Foundation SPIROSKI.
Impact from our research
Marrow donation related projects
Scientific Foundation SPIROSKI is founded on 03.02.2002 year.
Registered in Central Registry for Foundations with UBIN: 5889243 and VAT: 4030004519877
Registered address: st. Rajko Zhinzifov br. 48, 1000 Skopje, Republic of Macedonia
