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🧬 IQVIA published a report on the sustainability of biosimilar markets in Europe. Published 12 May 2026 🧬 IQVIA published a report on the sustainability of biosimilar markets in Europe. In the UAE, for the first time outside the USA, an adult patient with SMA has been administered the gene therapy Itvisma Published 04 May 2026 In the UAE, for the first time outside the USA, an adult patient with SMA has been administered the gene therapy Itvisma Chiesi acquires KalVista: the first oral drug for the treatment of attacks of hereditary angioedema Published 02 May 2026 Chiesi acquires KalVista: the first oral drug for the treatment of attacks of hereditary angioedema Following the results of the II Orphan Forum of the CIS countries, an article was published in The BRICS Health Journal Published 30 April 2026 Following the results of the II Orphan Forum of the CIS countries, an article was published in The BRICS Health Journal Registration is now open for the webinar "Orphan Drug Status: Regulatory Approaches and Practices of EAEU Countries" Published 29 April 2026 Registration is now open for the webinar "Orphan Drug Status: Regulatory Approaches and Practices of EAEU Countries" The CIS Orphan Consortium and the National Institute for Health Research of Iran signed a cooperation agreement Published 28 April 2026 The CIS Orphan Consortium and the National Institute for Health Research of Iran signed a cooperation agreement The first gene therapy to restore hearing: A historic FDA decision and a new challenge for healthcare systems Published 27 April 2026 The first gene therapy to restore hearing: A historic FDA decision and a new challenge for healthcare systems Bismarck or Beveridge? Does the financing model determine health system outcomes? Published 21 April 2026 Bismarck or Beveridge? Does the financing model determine health system outcomes? April 23–24 | St. Petersburg Published 20 April 2026 April 23–24 | St. Petersburg New drug price regulation policy in the US and its impact on willingness to pay thresholds Published 06 April 2026 New drug price regulation policy in the US and its impact on willingness to pay thresholds The FDA has approved Avlayah for the treatment of neurological manifestations of Hunter syndrome Published 27 March 2026 The FDA has approved Avlayah for the treatment of neurological manifestations of Hunter syndrome Monitoring patient-reported outcomes is becoming the new norm in clinical trials Published 23 March 2026 Monitoring patient-reported outcomes is becoming the new norm in clinical trials Russia has updated its list of rare diseases Published 11 March 2026 Russia has updated its list of rare diseases The CIS Orphan Consortium has joined Rare Diseases International. Published 09 March 2026 The CIS Orphan Consortium has joined Rare Diseases International. FDA launches new mechanism to expedite development of individualized targeted therapies for ultra-rare diseases Published 25 February 2026 FDA launches new mechanism to expedite development of individualized targeted therapies for ultra-rare diseases A new rare disease, El-Hattab–Schmidts syndrome, has been established in global clinical genetics. Published 22 February 2026 A new rare disease, El-Hattab–Schmidts syndrome, has been established in global clinical genetics. China updates regulations for implementing the Medicines Regulation Law Published 18 February 2026 China updates regulations for implementing the Medicines Regulation Law The US has extended the Priority Review Voucher (PRV) program for rare pediatric diseases. Published 17 February 2026 The US has extended the Priority Review Voucher (PRV) program for rare pediatric diseases. Sechenov University discussed the possibilities of innovative treatment methods for children with severe and rare diseases. Published 16 February 2026 Sechenov University discussed the possibilities of innovative treatment methods for children with severe and rare diseases. An expert review under the auspices of the CIS Orphan Consortium was published in the Journal of Health Development. Published 14 February 2026 An expert review under the auspices of the CIS Orphan Consortium was published in the Journal of Health Development. The CIS Orphan Consortium continues its series of webinars on MCDA Published 12 February 2026 The CIS Orphan Consortium continues its series of webinars on MCDA

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