{"id":987696360,"date":"2024-05-31T08:52:45","date_gmt":"2024-05-31T07:52:45","guid":{"rendered":"https:\/\/p4h.world\/?post_type=news&p=987696360"},"modified":"2024-05-31T09:12:53","modified_gmt":"2024-05-31T08:12:53","slug":"the-russian-federation-and-kazakhstan-offer-guidance-on-rare-or-orphan-diseases-to-children-and-families","status":"publish","type":"news","link":"https:\/\/p4h.world\/en\/news\/the-russian-federation-and-kazakhstan-offer-guidance-on-rare-or-orphan-diseases-to-children-and-families\/","title":{"rendered":"The Russian Federation and Kazakhstan offer guidance on rare, or orphan, diseases"},"content":{"rendered":"

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Rare, or orphan,<\/strong> diseases are a terrible burden for children and families. They present national challenges for financial protection. Information provided by some P4H Coordination Team members on how the Russian Federation and Kazakhstan address these diseases suggests a P4H Network international technical exchange on this topic should be considered.<\/strong><\/p>\n

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Nelly Gilyazetdinova, P4H country focal person<\/a> at the Center for Healthcare Quality Assessment and Control of the Ministry of Health in Moscow, recently wrote an article<\/a> about orphan diseases and financial protection in the Russian Federation. In Kazakhstan, explains the P4H coordination desk (P4H-CD) Eastern Europe and Central Asia community manager<\/a>, the president established a fund called “for the People of Kazakhstan”, of which roughly half goes towards rare, or orphan, diseases.<\/p>\n

This topic has garnered the P4H-CD\u2019s interest for several reasons:<\/p>\n