Creation of the information portal of the CIS Orphan Cosorium

The CIS Orphan Consortium Information Portal is being created to consolidate and systematize information on rare diseases in the CIS countries, available in various open sources. This portal will become a key tool for healthcare professionals, patient organizations and all stakeholders, providing access to up-to-date data that will help improve the diagnosis, treatment and management of rare diseases in the region.

The portal will provide detailed descriptions of rare diseases, including their epidemiology, clinical characteristics, etiology, diagnostic methods, differential diagnosis, treatment and prognosis. Information on the presence of diseases in national lists, expert centers, diagnostic laboratories, patient organizations, clinical trials, screening programs and clinical guidelines will also be available.

Particular attention will be paid to information on drugs for the treatment of rare diseases. Users will be able to search for data by international nonproprietary name, trade name or disease, as well as learn about the drug registration status, its inclusion in reimbursement lists and funding sources.

The portal will provide a convenient search for specialized clinical centers and laboratories by disease, country and city, which will significantly simplify access to highly qualified care. In addition, users will be able to find information on clinical trials and research projects related to rare diseases, as well as access to current clinical guidelines and registry data.

The project is aimed at creating a unified information ecosystem that will help improve coordination between the CIS countries and increase the availability of modern solutions for patients with rare diseases. We invite everyone interested in developing care for patients with rare diseases and ready to contribute to the implementation of this important project to cooperate.