III CIS Forum on Rare Diseases
Date of the event: 25 May 2026 - 26 May 2026
Recordings of the III CIS Orphan Forum are now available on the Orphan Consortium's RuTube channelThe recordings of the forum opening, both plenary sessions, and all thematic sessions held on May 25–26, 2026, have been published.
Revisit the speakers' presentations, share the recordings with colleagues and patient communities.
Recordings of the plenary sessions and Session 1 of Day 1, as well as Sessions 2, 3, 4, 5, and 10 of Day 2, are available in two languages — Russian and English.
CIS Orphan Consortium RuTube Channel: https://rutube.ru/channel/62269992/
Day 1 — May 25 | Opening and Plenary Programme Forum Opening and Plenary Session 1. BRICS Collaboration in Rare Diseases: From Experience Exchange to Joint Initiatives
RU · 
EN Plenary Session 2. Development of Patient Care Systems for Rare Diseases in CIS Countries RU · EN Session 1. Manufacturing, Regulation, and Drug Supply of Orphan Drugs RU · EN Day 2 — May 26 | Three Parallel Tracks
Track 1. Health Policy, Care Delivery, and Accessibility Session 2. International Experience in the Development of Genetic Technologies RU · EN Session 3. Health Technology Assessment in Rare Diseases RU · EN Session 4. Patient Organizations as Partners of the Healthcare System RU · EN Session 5. Real World Data and Real World Evidence RU · EN
Track 2. Diagnostics, Clinical Approaches, and Innovative Therapy Session 6. Gene and Cell Technologies in Orphan Diseases Session 7. Orphan Centers and Patient Referral Pathways Session 8. Rare Disease Registries as Infrastructure for Clinical Data, Referral, and Decision-Making
Track 3. Specific Groups of Rare Diseases Session 9. Rare Neuromuscular Diseases Session 10. Lysosomal Storage Disorders RU · EN Session 11. Rare Hematological Diseases Session 12. Primary Immunodeficiencies The forum programme, summary materials, and resolution are available on the Orphan Consortium website: https://orphan-cis.net/
Thank you to everyone who spent these two days with us. See you next time!
With the support of
