III CIS Orphan Forum 25 May 2026 Plenary Session 1: BRICS Cooperation in the Field of Rare Diseases

Plenary of the III CIS Orphan: “BRICS Cooperation in the Field of Rare Diseases: From Sharing Experience to Joint Initiatives.” This session brought together international experts, representatives of healthcare authorities, professional organizations, patient communities, and rare disease initiatives to discuss the future of BRICS cooperation in the field of rare diseases. The discussion focused on practical areas where international collaboration can create the greatest value for patients, including the exchange of expertise, clinical experience and data, while respecting national regulatory and ethical frameworks. Special attention was given to the potential role of the BRICS Orphan Consortium as a voluntary expert platform for dialogue, coordination, and the development of joint initiatives in rare disease care. Moderators: Alexander Rumyantsev — President of the CIS Orphan Consortium; Dmitry Rogachev National Medical Research Center of Pediatric Hematology, Oncology and Immunology, Russia Elena Shamal — Advisor to the Department for Humanitarian Cooperation, General Political and Social Problems of the CIS Executive Committee; Secretary of the CIS Council for Cooperation in Health Speakers: Anna Frolova — Deputy Director of the Department for Regulation of Circulation of Medicines and Medical Devices, Ministry of Health of the Russian Federation Dr. Tarun Dua — Head of the Unit for Neurological, Sensory and Oral Health Conditions, World Health Organization Sara Brambilla — Global Programme Manager, Rare Diseases International Nuria Musina — Executive Director, CIS Orphan Consortium Shuyang Zhang, MD, PhD — Peking Union Medical College Hospital, China Prof. Ayman El-Hattab — Director, Genetics and Rare Disease Center, Burjeel Medical City; Founder & President, MENA Organization for Rare Diseases, UAE Dr Ali Akbarisari — Head of Iran’s National Institute for Health Research Kelly du Plessis — Founder and CEO, Rare Diseases South Africa #CISOrphanForum #RareDiseases #OrphanDiseases #BRICS #Healthcare #RareDiseaseCare #OrphanDrugs #PublicHealth #CISOrphanConsortium #CISOrphanForum2026