Orphan centers are a key element in the system of care for patients with rare diseases
A specialized session was held within the II CIS Orphan Forum: “Organization of a system of care for rare diseases: orphan centers, regional and national coordinators.”
- The session presented the best practices for the creation and development of orphan centers - at the national level (for example, in 🇰🇿 Kazakhstan) and regional (the experience of 🇷🇺 Russia and 🇺🇿 Uzbekistan).
- It was discussed how to form a sustainable system in which each patient with a rare disease receives coordinated, timely and continuous care.
Orphan centers are the coordination hub of the system, performing several functions
- Patient routing by specific nosologies: from diagnosis to access to therapy;
- Coordination of drug supply:application formation, effectiveness monitoring and interaction with experts;
- Expert support for decisions: through specialized committees and expert groups;
- Maintenance and development of registries: data completeness and analytics at the regional and national levels;
- Digital management tools:including integration with national healthcare platforms;
- Education and training: for rare disease specialists and doctors of other specialties;
- Communication with patient organizations and participation in the development of social and organizational solutions;
- Development of science and implementation of innovations: together with the expert and research community
Session moderators:
- Embergenova Magripa Khamitovna, Director of the Department of Maternal and Child Health of the Ministry of Health of the Republic of Kazakhstan
- Rumyantsev Alexander Grigorievich, President of the CIS Orphan Consortium, Academician of the Russian Academy of Sciences
