About the Forum
On May 25–26, 2026, the 3rd CIS Orphan Forum will convene as an annual international expert platform for high-level dialogue on rare disease care.
The Forum brings together health authorities, regulators, leading clinicians and researchers, pharmaceutical manufacturers, patient advocacy organizations, and health technology assessment experts.
The Forum brings together health authorities, regulators, leading clinicians and researchers, pharmaceutical manufacturers, patient advocacy organizations, and health technology assessment experts.
The 2026 theme: strengthening rare disease care across the CIS region and building effective cooperation with BRICS countries.
The Forum will provide a venue to review the past year's developments in national care systems and align on joint priorities going forward.
The Forum will provide a venue to review the past year's developments in national care systems and align on joint priorities going forward.
2
DaYS
of in-depth programming
20
countries
represented across the CIS, BRICS, Middle East, Asia, Africa, Europe, and Latin America
100+
speakers
— leading voices in the rare disease community
14
expert sessions:
2 plenaries
12 thematic sessions
12 thematic sessions
THREE THEMATIC TRACKS
DAY 2
May 26, 2026
Track 1. Health policy, service delivery, and access
9:00–11:00
Session 2. International experience in advancing genetic technologies for rare disease care
11:00–11:15
BREAK
11:15–13:15
Session 3. Health technology assessment for rare diseases
11:15–11:45
BREAK
11:45–15:45
Session 4. Patient organizations as partners in the healthcare system
15:45–16:00
BREAK
16:00–18:00
Session 5. The Role of Real-World Data in Rare Diseases
Track 2. Diagnostics, clinical approaches, and innovative therapies
9:00 – 11:00
Session 6. Gene and cell therapies for rare diseases: from research to clinical practice
11:00–11:15
BREAK
11:15–13:15
Session 7. Orphan centers and patient pathways: organizing specialized care
11:15–11:45
BREAK
11:45–15:45
Session 8. Registries and digital infrastructure for rare diseases: clinical data, research, patient pathways, and decision-making
15:45–16:00
BREAK
Track 3. Spotlight on specific rare diseases
09:00–11:00
Session 9. Rare neuromuscular diseases
11:00–11:15
BREAK
11:15–13:15
Session 10. Lysosomal storage diseases: diagnosis, patient pathways, and access to therapy across the CIS
11:15–11:45
BREAK
11:45–15:45
Session 11. Rare haematological diseases
15:45–16:00
BREAK
16:00–18:00
Session 12. Primary Immunodeficiencies
Participating Organizations
International (BRICS, Middle East, Asia, Africa, Europe, Latin America): the World Health Organization (WHO), Rare Disease International (RDI), the Asia Pacific Alliance of Rare Disease Organisations (APARDO), the Organization for Rare Diseases India (ORDI), the China Scleroderma Association, Burjeel Medical City, Tehran University of Medical Sciences, Fudan University, the University of Pretoria, Aga Khan University, and other leading academic, clinical, expert, and patient organizations.
CIS region: leading clinical, academic, regulatory, and patient organizations from Russia, Belarus, Kazakhstan, Kyrgyzstan, Uzbekistan, Armenia, Azerbaijan, and Tajikistan.
CIS region: leading clinical, academic, regulatory, and patient organizations from Russia, Belarus, Kazakhstan, Kyrgyzstan, Uzbekistan, Armenia, Azerbaijan, and Tajikistan.
Participating Organizations from CIS Countries
The Forum will feature representatives from leading clinical, academic, educational, expert, and patient organizations across the CIS, including:
The Forum will feature representatives from leading clinical, academic, educational, expert, and patient organizations across the CIS, including:
Russia
Kazakhstan
Belarus
- Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Oncology and Immunology
- Sechenov University (I.M. Sechenov First Moscow State Medical University)
- Pirogov Russian National Research Medical University (RNRMU)
- Kazan Federal University
- Pavlov First Saint Petersburg State Medical University
- National Medical Research Center for Hematology, Russian Ministry of Health
- National Association of Rare Disease Experts (NARDE)
- Russian Health Technology Assessment Association
- All-Russian Union of Patients
- Association of Pharmaceutical Manufacturers of the Eurasian Economic Union
- Association of International Pharmaceutical Manufacturers
Kazakhstan
- Salidat Kairbekova National Research Center for Health Development
- Research Institute of Cardiology and Internal Diseases
- Center for Molecular Medicine
- Kazakhstan Association of Medical Geneticists
- Kazakh Society of Immunodeficiencies
- Scientific Center of Pediatrics and Pediatric Surgery, Almaty
Belarus
- Belarusian State Medical University (BSMU)
- Republican Scientific and Practical Center "Mother and Child"
- Republican Scientific and Practical Center for Pediatric Oncology, Hematology and Immunology
- Republican Scientific and Practical Center for Transfusiology and Medical Biotechnologies
- N.N. Alexandrov National Cancer Center of Belarus
Kyrgyzstan
Uzbekistan
Azerbaijan
Armenia
Georgia
…along with other specialized expert, clinical, and patient organizations from across the region.
- Kyrgyz-Russian Slavic University
- I.K. Akhunbaev Kyrgyz State Medical Academy
- National Center for Maternal and Child Health
- National Center of Oncology and Hematology, Ministry of Health of the Kyrgyz Republic
Uzbekistan
- Republican Specialized Scientific and Practical Medical Center of Pediatrics
- National Children's Medical Center of Uzbekistan
- Republican Specialized Scientific and Practical Medical Center of Pediatric Oncology, Hematology and Immunology
- Republican Specialized Scientific and Practical Medical Center of Maternal and Child Health
- Tashkent Pediatric Medical Institute
- Institute of Immunology and Human Genomics, Academy of Sciences of Uzbekistan
Azerbaijan
- Azerbaijan Medical University
- A. Aliyev Azerbaijan State Advanced Training Institute for Doctors
Armenia
- "Arabkir" Joint Medical Center & Institute of Child and Adolescent Health
- Armenian Association of Evidence-Based Medicine Specialists
Georgia
- Center for Medical Genetics and Laboratory Diagnostics, Tbilisi
…along with other specialized expert, clinical, and patient organizations from across the region.
Speakers
Over 100 speakers will join the Forum
— leading experts in the field of rare diseases from 20 countries: health policymakers, regulators, clinicians, researchers, and representatives of patient organisations and international bodies.
- Renad AlyautdinHead of the Division for Evaluation of Medicinal Products Safety, Scientific Centre for Expert Evaluation of Medicinal Products, Russia
- Fatmahan AtalarProfessor, Nutrition and Metabolism Unit, Department of Pediatrics, Istanbul Faculty of Medicine, Istanbul University; Rare Diseases Research Laboratory, Türkiye
- Abdumannon AbdukayumovDirector, Republican Specialized Scientific and Practical Medical Center of Pediatrics, Republic of Uzbekistan
- Sara BrambillaGlobal Programme Manager, Rare Diseases International
- Gleb BroninAssociate Professor; Deputy Director for Research and Innovation, International Academic Hub for Pediatric Cancer; Deputy Chief Physician for Hematology, Scientific and Practical Medical Center for Pediatric Oncology, Hematology and Immunology, Tashkent, Uzbekistan
- Emil BulatovLeading Researcher, Kazan Federal University, Russia
- David DankoManaging Partner, Ideas & Solutions, Hungary
- Marina DurmanovaPresident, Association for the Support and Development of Pharmaceutical Activities of the Republic of Kazakhstan
- Ayman El-HattabDirector, Genetics and Rare Disease Center, Burjeel Medical City, Abu Dhabi, UAE; Consultant Clinical Genetics, Burjeel Medical City, Abu Dhabi, UAE; Professor, Department of Medical Sciences, College of Medical and Health Sciences, Khalifa University, Abu Dhabi, UAE; Founder & President, MENA Organization for Rare Diseases, United Arab Emirates.
- Ambrin FatimaProfessor of Genetics, Aga Khan University, Pakistan
- Larisa N. GavrilenkoProfessor, Department of Clinical Pharmacology, Belarusian State Medical University; Chair of the Board, Public Medical Association "Clinical Pharmacology and Therapy"; Editor-in-Chief, International Scientific and Practical Journal "RECIPE", Republic of Belarus
- Vitaly KadyshevMD, DSc; Head of the Scientific and Clinical Centre for Ophthalmic Genetics; Head of the Department of Ophthalmogenetics, Research Centre for Medical Genetics; Clinical Geneticist and Ophthalmologist; National Coordinator for Hereditary Eye Diseases, Russia
- Alexey KedrinChair of the Board, Association of Pharmaceutical Manufacturers of the Eurasian Economic Union
- Natalia KonoplyaProfessor; Principal Researcher, Anticancer Drug Therapy Laboratory, N.N. Alexandrov Republican Scientific and Practical Center for Pediatric Oncology and Medical Radiology, Belarus
- Alexey KolbinMD, PhD, Professor, Head of the Department of Clinical Pharmacology and Evidence-Based Medicine, Pavlov First Saint Petersburg State Medical University, Russia
- Anna LakhtanovaChair, Regulatory Committee, Association of International Pharmaceutical Manufacturers (AIPM)
- Lali MargvelashviliDirector, Centre for Medical Genetics and Laboratory Diagnostics, Tbilisi, Georgia
- Michael MaschanProfessor; Deputy Director General for Research and Director, Institute of Molecular and Experimental Medicine, Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Oncology and Immunology, Russia
- Elena MaksimkinaDirector, Federal Center for Planning and Organization of Drug Provision for Citizens, Russian Ministry of Health
- Albert M. MartirosyanPresident, Armenian Association of Specialists in Evidence-Based Medicine, Armenia
- Nuriya MusinaExecutive Director of the CIS Orphan Consortium, Associate Professor, Department of Technological Leadership, Sechenov University, Russia.
- Mohammadreza MobinizadehAssociate Professor of Health Management and Economics, National Institute for Health Research, Tehran University of Medical Sciences, Iran
- Alexander MalogolovkinHead of the Molecular Virology Laboratory, Sechenov University, Russia
- Polina A. MukhortovaChief Specialist, Methodological Support Department for Comprehensive Health Technology Assessment, Centre for Healthcare Quality Assessment and Control, Ministry of Health of the Russian Federation
- Christine MutenaCo-Founder, Rare Disorders Kenya, Kenya
- Timur O. NarbekovHaematologist, World Federation of Hemophilia Expert for Central Asian Countries, National Centre of Oncology and Haematology, Ministry of Health of the Kyrgyz Republic
- Evgenia NazarovaExecutive Director, National Association of Rare Disease Experts (NARDE); Deputy Chief Physician for Clinical and Expert Affairs, Head of Department, Allergist-Immunologist, National Research Centre — Institute of Immunology, Federal Medical Biological Agency (FMBA), Russia
- Alireza OlyaeemaneshProfessor of Health Policy, Head of the Department of Health Economics and Decision Making, National Institute for Health Research, Tehran University of Medical Sciences, Iran
- Oksana V. PribushenyaMD, PhD, Professor; Laboratory of Medical Genetics and Monitoring of Congenital Malformations, Republican Scientific and Practical Centre "Mother and Child", Belarus.
- Alexander RumyantsevPresident of the Orphan Consortium of CIS States, Member of the Russian Academy of Sciences; Chair of the Board, National Association of Rare Disease Experts (NARDE); President, Dmitry Rogachev National Medical Research Centre of Paediatric Haematology, Oncology and Immunology, Ministry of Health of the Russian Federation
- Frederico SallumChiesi Brasil, Brazil.
- Ayman SemaanExpert in Pharmaceutical Market Access and Pricing; Member, Health Technology Assessment international (HTAi); Member of the Rare Diseases Working Group
- Elena ShamalAdvisor, Department for Cooperation in Political, Humanitarian and Social Affairs, CIS Executive Committee; Secretary, CIS Council on Cooperation in Healthcare
- Marhabo A. ShamsiddinovaPediatric Neurologist, Medical Geneticist, PhD candidate; Republican Specialized Scientific and Practical Medical Centre for Maternal and Child Health, Department of Maternal and Child Screening; Deputy Chairperson of the Association of Clinical Neurophysiologists and Medical Geneticists of Uzbekistan
- Tatiana ShamanskayaPediatric Oncologist; Head, Solid Oncology Department, Institute of Oncology, Radiology and Nuclear Medicine, Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Oncology and Immunology
- Prasanna ShirolCo-Founder and Executive Director, Organization for Rare Diseases India (ORDI), India
- Gulnara SvyatovaProfessor, MD, PhD; President Association of Medical Geneticists, Kazakhstan
- Adlet B. TabarovDeputy Chairman of the Board of Salidat Kairbekova National Scientific Center for Health Development, Ministry of Health of the Republic of Kazakhstan, Republic of Kazakhstan
- Dmitry VlodavetsHead of the Federal Center for Neuromuscular Diseases; Leading Researcher, Department of Psychoneurology and Epileptology, Veltischev Research and Clinical Institute for Pediatrics, Pirogov Russian National Research Medical University
- Sergey V. VoroninMD, PhD, Chief Physician; Associate Professor, Department of Biochemical Genetics and Hereditary Metabolic Diseases, Research Centre for Medical Genetics named after Academician N.P. Bochkov; Chief Specialist in Medical Genetics of the Ministry of Health of the Russian Federation for the Far Eastern Federal District.
- Denis RebrikovPhD, DrSci, Professor of the Russian Academy of Sciences; Vice-Rector for Research, Pirogov Russian National Research Medical University, Russia
- Durhane Wong-RiegerPresident, Asia Pacific Alliance of Rare Disease Organisations (APARDO), Canadа
- Alison ZhengFounder and President of the China Scleroderma Association, China
- Yuri ZhulevCo-Chair of the All-Russian Patients’ Union and President of the Russian Hemophilia Society, Russia
- Nadezhda I. ZozulyaMD, PhD, Head of the Clinical and Diagnostic Department of Haematology and Haemostasis Disorders, National Medical Research Centre for Haematology, Ministry of Health of the Russian Federation
- Aida A. ZurdinovaHead of the Department of Basic and Clinical Pharmacology, Kyrgyz-Russian Slavic University named after the First President of the Russian Federation B.N. Yeltsin; Chief External Clinical Pharmacologist, Ministry of Health of the Kyrgyz Republic
Organiser
The CIS Orphan Consortium is an international professional alliance of more than 30 scientific, clinical, expert, and patient organisations from across the CIS, EAEU, and BRICS regions. Its mission is to advance sustainable and accessible care for patients with rare diseases through knowledge exchange, joint research, and the harmonisation of regulatory and clinical approaches across the region.
The Consortium organises the Forum and shapes its expert agenda and final outcomes.
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