Rare diseases as a global priority: the CIS Orphan Forum and the path toward collaboration with BRICS

The Second Orphan Forum of the Commonwealth of Independent States, held in Moscow on June 26–27, 2025, served as a platform to translate World Health Assembly Resolution 78.11 on rare diseases into coordinated policy action. The Forum convened delegates from eight Commonwealth of Independent States members and representatives from India, the United Arab Emirates, South Africa, and Oman, advancing interregional cooperation. Participants highlighted shared challenges: lack of national strategies and harmonized definitions of rare diseases, gaps in diagnostics and care infrastructure, limited registries, shortages of trained specialists, and unstable funding. The adopted Resolution set four priority domains for joint work: policy and regulatory development; organization of care and workforce capacity; pharmaceutical provision and health technology assessment; and international collaboration. Country presentations showed progress alongside persistent gaps. Priorities include expanding screening, establishing centers of expertise, improving patient pathways, extending reimbursement, introducing accelerated regulatory procedures, and updating clinical guidelines. Recommendations emphasize integrated care, continuity from pediatric to adult services, stronger health technology assessment for orphan medicines, real-world data collection, and managed entry and risksharing agreements. The Forum also concluded that closer cooperation on rare diseases is needed within BRICS, especially to improve the efficiency of orphan medicine development, manufacturing, and procurement through coordinated approaches, demand aggregation, and joint price negotiations.

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