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December 12 is Universal Health Coverage Day. Published 12 December 2025 December 12 is Universal Health Coverage Day. Gene-cell therapies in the sights of HTA: An international study has shown that the success of high-tech drugs (HTDs) is determined not only by price Published 10 December 2025 Gene-cell therapies in the sights of HTA: An international study has shown that the success of high-tech drugs (HTDs) is determined not only by price EMA recommends approval of Waskyra, a gene therapy treatment for Wiskott-Aldrich syndrome Published 09 December 2025 EMA recommends approval of Waskyra, a gene therapy treatment for Wiskott-Aldrich syndrome The Organization for Rare Diseases of India (ORDI) is calling for funding for rare diseases based on the Russian "Circle of Good" model. Published 08 December 2025 The Organization for Rare Diseases of India (ORDI) is calling for funding for rare diseases based on the Russian "Circle of Good" model. WHO has released guidelines on best practices for conducting clinical trials: what trials should look like today Published 05 December 2025 WHO has released guidelines on best practices for conducting clinical trials: what trials should look like today FDA approves first gene replacement therapy for SMA available to all ages Published 04 December 2025 FDA approves first gene replacement therapy for SMA available to all ages Uzbekistan: New state program to help children with orphan diseases for 2026–2030 Published 03 December 2025 Uzbekistan: New state program to help children with orphan diseases for 2026–2030 The CIS Orphan Consortium has a new member! Published 12 November 2025 The CIS Orphan Consortium has a new member! MCDA in Rare Diseases: A Tool for Accurate and Fair Treatment Evaluation Published 25 October 2025 MCDA in Rare Diseases: A Tool for Accurate and Fair Treatment Evaluation Orphan diseases and pediatric anesthesiology: the experience of Russia and Uzbekistan Published 13 October 2025 Orphan diseases and pediatric anesthesiology: the experience of Russia and Uzbekistan RWE in Orphan Diseases: International Dialogue and Joint Decisions Published 07 October 2025 RWE in Orphan Diseases: International Dialogue and Joint Decisions Biomedical Collaboration: A Visit to Beijing's Daxing Science and Technology Park Published 06 October 2025 Biomedical Collaboration: A Visit to Beijing's Daxing Science and Technology Park Visit of NAERES representatives to the Beijing Orphan Center Published 01 October 2025 Visit of NAERES representatives to the Beijing Orphan Center A cooperation agreement was signed between the National Medical Chamber of Russia and the Chinese Medical Association. Published 26 September 2025 A cooperation agreement was signed between the National Medical Chamber of Russia and the Chinese Medical Association. Orphan Center of Morozov Hospital: 10 years of systematic assistance to children with rare diseases in Moscow Published 24 July 2025 Orphan Center of Morozov Hospital: 10 years of systematic assistance to children with rare diseases in Moscow Russia: Orphan Center of Moscow Region Published 23 July 2025 Russia: Orphan Center of Moscow Region Orphan centers are a key element in the system of care for patients with rare diseases Published 21 July 2025 Orphan centers are a key element in the system of care for patients with rare diseases SMA: Russia's path from emergency response to a systemic model of care Published 14 July 2025 SMA: Russia's path from emergency response to a systemic model of care

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