Republican Center for Orphan Diseases unveiled in Astana
On the first day of summer, the capital of Kazakhstan welcomed the opening of the Republican Center for Orphan Diseases (RCOD), Kazinform News Agency learned from the Ministry of Healthcare press service.
Those attending the ceremony were Minister of Healthcare Akmaral Alnazarova, Children's Rights Commissioner Dinara Zakiyeva, Nazarbayev University Vice President – Dean of School of Medicine Massimo Pignatelli, Chairman of the UMC Corporate Fund Yuri Pya, and experts.
The RCOD will operate on the ground of UMC and is expected to become a coordination center for diagnostics, treatment and evaluation of long-term results of rare disease therapy. The main goal of the RCOD is to improve medical care and quality of life for patients with rare diseases.
“The establishment of the RCOD will eliminate a 'piecemeal approach' to the diagnostics and treatment of orphan diseases and will ensure coordinated efforts of the medical community to improve the availability of highly specialized care, to find effective treatment methods and to develop diagnostic systems,” says Minister of Healthcare Akmaral Alnazarova.
The Minister also visited the children with orphan diseases undergoing treatment at the UMC, congratulated them on the International Children’s Day and wished them speedy recovery.
In recent years, the country has observed a positive tendency in early detection of hereditary diseases. Only 12,948 children with orphan diseases have been registered to date countrywide. 7,239 of them have been diagnozed with central and peripheral nervous system diseases.
The RCOD is called to play a key role in coordination of the efforts on diagnostics and treatment of rare diseases at the national level, by providing patients with an access to the up-to-date methods of treatment and support.
