Nuriya Z. Musina, MSc, MBA, PhD, Associate Professor, Executive Director, CIS Orphan Consortium; Deputy Head, Expert and Analytical Center for Horizon Scanning in Healthcare, Sechenov University
1/2, office 3/3, Chongarsky Blvd., Moscow, 1175568/2; Trubetskaya str., Moscow, 119991
Ahmed Al Saidi, MD, Chairman of the Board of Trustees for A’Sharqiyh University
Ibra, Ash Sharqiyah North Governorate, P.O Box 42, Ibra, 400, Sultanate Of Oman
Ayman W. El-Hattab, MD, PhD, Professor, Director, Genetics and Rare Disease Center, BurjeelMedical City; Professor, Department of Medical Sciences, College of Medical and Health Sciences, Khalifa University; Founder and President,MENA Organization for Rare Diseases
28th str., Mohamed Bin Zayed City, P.O. Box 9054, Abu Dhabi; Al Saada str., P.O. Box 127788, Abu Dhabi; Office 102-103, Floor 13, Head Quarter South, Dubai Science Park, Dubai
Helen Malherbe, MSc, PhD, Associate Professor, Centre for Human Metabolomics, Desmond Tutu School of Medicine, Faculty of Health Sciences
Private Bag X6001, Potchefstroom 2520, Republic of South Africa
Prasanna Kumar B. Shirol, BSc, MBA, Co-founder and Executive Director
Basavanna Nagar, Hoodi, Bengaluru 560048, India
Ulrike Schwerdtfeger, Assessor iur., Technical Officer
20, Appia Ave., 1211 Geneva 27, Switzerland
Dilorom I. Akhmedova, MD, DSc (Med.), Professor of the Department of Hospital Pediatrics
2, Farobi str., Tashkent, 001109
Tamara U. Aripova, MD, DSc (Med.), Professor, Academician, Director, Institute of Immunologyand Human Genomics
74, Yashnobod str., Tashkent, 100125
Bakhyt M. Baigaliyeva, MD, Founder and Head
3/3-2, Bogenbay Batyr Ave., Astana, 010000
Zaure D. Dushimova, MD, PhD, Associate Professor, Head of the Adult Rare Disease CoordinationCenter; Associate Professor
120 Aiteke Bi str., Almaty 050000; 71, Al-Farabi Ave., Almaty, 050040
Lazzat M. Esbatyrova, MSc, Director, Department for Pharmaceutical Policy Improvement
8, Mangilik El Ave., Astana, 010000
Nadezhda V. Gasparyan, MD, Pediatric Neurologist
30, Mamikonyants str., Yerevan, 0014
Sergey N. Illarioshkin, MD, DSc (Med.), Professor, Academician of the Russian Academy of Sciences, Deputy Director and Director of the Brain Institute, Research Center of Neurology; Head of the Department of Neurology
80, Volokolamskoye Shosse, Moscow, 125367; 20/1, Delegatskaya str., Moscow, 127473
Elena A. Kalinina, MD, Deputy Director
66, Orlovskaya str., Minsk, 220053
Mekhpara Kazimova, MD, PhD, hematologist, Associate Professor
35, Muzaffar Hasanov str., Baku, AZ1012
Totu Keldibekova, PhD, Chief Specialist
148, Moskovskaya str., Bishkek, 720040
Alexey S. Kolbin, MD, DSc (Med.), Professor, Head of the Department of Clinical Pharmacology and Evidence-Based Medicine
6–8, Lva Tolstogo str., Saint Petersburg, 197022
Alexander V. Kostyuk, MD, PhD, Advisor to the Minister of Health of the Republic of Kazakhstan
8, Mangilik El Ave., Astana, 010000
Elena A. Maksimkina, DSc (Pharm.), Professor, Director
6, building 1, Vorontsovskaya str., Moscow, 117186
Timur O. Narbekov, MD, Hematologist, Expert in Hemophilia and Rare Orphan Diseases; Assistant Professor, Department of Family Medicine
190, Akhunbaev str., Bishkek, 720064; 92, Akhunbaev str., Bishkek, 720020
Evgeniya V. Nazarova, MD, DSc (Med.), Deputy chief physician of NRC Institute of Immunology FMBA of Russia ; Executive director of NationalAssociation of Rare Disease Experts
24 Kashirskoye Shosse, Moscow, 115522; 1/2, office 3/3, Chongarsky Blvd., Moscow, 117556
Antonina A. Pak, MD, Head of the Department of Specialized Pediatrics and Medical Genetics
294, Parkent str., Tashkent, 100171
Sergey I. Savashinsky, MD, PhD, Chief Executive Officer of the Eurasian Cooperation for Clinical Guidelines and Public Health Development
8/2, Turkistan str., Esil District, Astana, 010000
Alexandr S. Semenov, MD, PhD, Associate Professor, Deputy Director
7A, Petrusya Brovki str., Minsk, 220013,
Tatiana V. Shamanskaya, MD, DSc (Med.), Pediatric Oncologist, Head of the Department of Embryonic Tumors Research, Institute of Oncology, Radiology and Nuclear Medicine
1, Samory Mashela str., Moscow, 117997
Vadim V. Tarasov, DSc (Pharm.), Vice-Rector for Scientific and Technological Development
8/2, Trubetskaya str., Moscow, 119991
Ernas T. Tuleutaev, MD, DSc (Med.), Pediatrician, Head
5/1, Kerei and Zhanibek Khans str., Astana, 010000
Yuri A. Zhulev, President, Russian Hemophilia Society ; Co-Chair, Russian Union of Patients
5/2 Naryshkinskaya Alley, Moscow, 125167; 5/1, Naryshkinskaya Alley, Moscow, 125167
Nadezhda I. Zozulya, MD, DSc (Med.), Head of the Clinical Diagnostic Department of Hematology and Hemostasis Disorders
4, Novy Zykovsky Proyezd, Moscow, 125167
Alexander G. Rumyantsev, MD, DSc (Med.), Professor, Academician of the Russian Academy of Sciences, President, CIS Orphan Consortium, ,Russia; President, Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Oncology and Immunology, Ministry of Health of the Russian Federation
1/2, office 3/3, Chongarsky Blvd., Moscow, 117556; 1, Samory Mashela str.,Moscow, 117997
The Second Orphan Forum of the Commonwealth of Independent States, held in Moscow on June 26–27, 2025, served as a platform to translate World Health Assembly Resolution 78.11 on rare diseases into coordinated policy action. The Forum convened delegates from eight Commonwealth of Independent States members and representatives from India, the United Arab Emirates, South Africa, and Oman, advancing interregional cooperation.
Participants highlighted shared challenges: lack of national strategies and harmonized definitions of rare diseases, gaps in diagnostics and care infrastructure, limited registries, shortages of trained specialists, and unstable funding. The adopted Resolution set four priority domains for joint work: policy and regulatory development; organization of care and workforce capacity; pharmaceutical provision and health technology assessment; and international collaboration.
Country presentations showed progress alongside persistent gaps. Priorities include expanding screening, establishing centers of expertise, improving patient pathways, extending reimbursement, introducing accelerated regulatory procedures, and updating clinical guidelines. Recommendations emphasize integrated care, continuity from pediatric to adult services, stronger health technology assessment for orphan medicines, real-world data collection, and managed entry and risksharing agreements.
The Forum also concluded that closer cooperation on rare diseases is needed within BRICS, especially to improve the efficiency of orphan medicine development, manufacturing, and procurement through coordinated approaches, demand aggregation, and joint price negotiations.
The authors declare that there are no conflicts of interest present.