Problems of providing medical care to patients with orphan diseases in the Russian Federation.

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Survey identifies gaps in medical care for orphan diseases in children, indicating urgent regulatory needs.

The survey highlights the urgent need for better drug provision for orphan diseases in Russia.
63.4% of regional health authorities reported needing additional medication funding for federal programs.
The neonatal screening program has expanded, yet many issues regarding orphan disease care remain unresolved.
There is a demand for regulatory frameworks to support the transfer of patients from pediatric to adult care.

I.P. Vitkovskaya (2025) studied this question.

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