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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. Ireland approves National Rare Disease Strategy 2025–2030 Published 29 August 2025 Ireland approves National Rare Disease Strategy 2025–2030 Patient-oriented oncology: the role of ePRO systems Published 26 August 2025 Patient-oriented oncology: the role of ePRO systems CAR-T Therapy: What Real-World Clinical Practice Data Shows Published 25 August 2025 CAR-T Therapy: What Real-World Clinical Practice Data Shows The EU launches the European Health Data Space — common rules and digital medicine without borders Published 14 August 2025 The EU launches the European Health Data Space — common rules and digital medicine without borders FDA Proposes New Path to Approval of Therapies for Ultra-Rare Diseases: Relying on Mechanism of Action Published 04 August 2025 FDA Proposes New Path to Approval of Therapies for Ultra-Rare Diseases: Relying on Mechanism of Action EMA publishes third annual report on the use of Real-World Evidence in the European Union (February 2024 – February 2025) Published 28 July 2025 EMA publishes third annual report on the use of Real-World Evidence in the European Union (February 2024 – February 2025) Patient-centric drug development: from needs identification to registration and inclusion in the reimbursement system Published 17 July 2025 Patient-centric drug development: from needs identification to registration and inclusion in the reimbursement system Rare Diseases - A Shared Responsibility: An Interview with Prasanna Kumar Shirol Published 12 July 2025 Rare Diseases - A Shared Responsibility: An Interview with Prasanna Kumar Shirol Exclusive interview with Professor Ayman El-Khattab |II Orphan CIS Forum, Moscow Published 11 July 2025 Exclusive interview with Professor Ayman El-Khattab |II Orphan CIS Forum, Moscow Definitions of Rare Diseases and Orphan Drugs: Challenges to Harmonization and Paths to Legal Convergence in the CIS Published 02 July 2025 Definitions of Rare Diseases and Orphan Drugs: Challenges to Harmonization and Paths to Legal Convergence in the CIS NICE updates approach to orphan technologies Published 02 July 2025 NICE updates approach to orphan technologies WHO presents annual World Health Statistics 2025 report: what does it say about global health priorities? Published 02 July 2025 WHO presents annual World Health Statistics 2025 report: what does it say about global health priorities? Historic step in the world of rare diseases: WHO adopts first resolution Published 02 July 2025 Historic step in the world of rare diseases: WHO adopts first resolution Living with a rare disease is more than just a medical problem; it is a whole complex of challenges that people face every day. Published 15 April 2025 Living with a rare disease is more than just a medical problem; it is a whole complex of challenges that people face every day. The recent Rare Barometer report, produced by EURORDIS in April 2025, reveals the reality of life for those living with such diseases in Europe and beyond. WHO Glossary: ​​A Key Step for Health Data Standardization Published 04 February 2025 WHO Glossary: ​​A Key Step for Health Data Standardization Orphan Drugs 2024: A Review of Progress in the US and Europe Published 13 January 2025 Orphan Drugs 2024: A Review of Progress in the US and Europe New era in health technology assessment in the EU: Joint Clinical Assessment Regulation comes into force Published 11 January 2025 New era in health technology assessment in the EU: Joint Clinical Assessment Regulation comes into force New data on the prevalence of rare diseases Published 11 January 2025 New data on the prevalence of rare diseases

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