The Republican Center for Orphan Diseases (RCOD) started its work on June 1st of 2024, marking a contribution to children’s health on the International Childrens’ Day. The main goal of the center is to improve medical care and quality of life for patients with rare diseases in Kazakhstan by arranging treatment and monitoring treatment results.
The opening ceremony was attended by the Minister of Healthcare Akmaral Alnazarova, the Commissioner for Children’s Rights in the Republic of Kazakhstan Dinara Zakieva, the Vice-president and dean of Nazarbayev University School of Medicine Massimo Pignatelli, the Chairman of the board of Corporate Fund “University Medical Center” Yuri Pya, as well as invited experts. This Center will become a uniform focal point for diagnosis, treatment and assessment of long-term results of treatment for rare diseases in Kazakhstan.
The establishment of the Republican Center for Orphan Diseases was proposed by the Public Fund “For the People of Kazakhstan” (“Kazakhstan Halkyna“) – a charity fund created by the President of Kazakhstan Kassym-Jomart Tokayev in January 2022 to streamline and garner charitable contributoins from wealthy individuals and corporations and channels them to the social sectors. The Fund spends more than half of its funding on the health sector, mostly to fund orphan (rare) diseases. In addition, rare diseases in Kazakhstan are funded by the Ministry of Healthcare through the Social Health Insurance Fund. However, organizing care for rare diseases has been a complex task that required much coordinatrion. To ensure that decisions about such expensive and complex care are made based on the latest medical evidence, the Ministry of Healthcare supported the idea to estabish a Republican Center for Orphan Diseases. This center was opened today as a structural unit of the corporate foundation “University Medical Center” (UMC) – an owner of three national level tertiary care medical organizations in Astana, where the most specialized care is provided already.
Minister of Healthcare Akmaral Alnazarova noted:
“The creation of the Republican Center for Orphan Diseases will eliminate the fragmented approach to diagnosis and treatment of orphan diseases and will ensure coordinated efforts of the medical community to improve the availability of highly specialized care, search for effective treatment methods and develop diagnostic systems.”
