When a beautiful newborn child struggles with limb movement or faces complete immobility, or when another child endures continuous bleeding and bruising from the slightest injury, the aspirations of middle-class parents are instantly devastated. Hundreds of innocent lives are being tragically lost without the possibility of treatment due to rare genetic disorders such as Spinal Muscular Atrophy (SMA) and Hemophilia. To dismantle the barrier of despair and secure the fundamental right to life for every child afflicted by these rare diseases, a dedicated roundtable discussion was convened, a press release said.
On the occasion of “World Rare Disease Day 2026,” the Department of Paediatric Neuroscience and the Department of Paediatric Hematology and Oncology of the Bangladesh Shishu Hospital and Institute (BSH&I) jointly organized a roundtable discussion titled “SMA and Hemophilia in Bangladesh: Current Situation and Way Forward” on Wednesday, March 11, 2026.
The session was chaired by Prof. Dr. A. K. M. Azizul Hoque, Chairman, Management Board, BSH&I. Distinguished speakers who attended as Special Guests included, Prof. Dr. Md. Abid Hossain Mollah, Member, Management Board, BSH&I, Professor, Pediatrics, Birdem General Hospital & Ibrahim Medical College; Prof. Dr. Md. Mahbubul Haque, Director, BSH&I and; Professor Dr. M Monir Hossain, Academic Coordinator and Member, Management Board, BSH&I. The discussion was moderated by Prof. Dr. Md. Abbas Uddin Khan, Professor & Head, Department of Paediatric Neuroscience, BSH&I.
The primary objective of this event was to evaluate the challenges and prospects of managing rare diseases in Bangladesh, specifically SMA and Hemophilia. BSH&I has already pioneered integrated diagnostic and management services for children with SMA. Similarly, specialized care and prophylactic treatment programs for children with Hemophilia are actively ongoing at the institute.
Keynote presentations were presented by Prof. Dr. Md. Belayet Hossain, Professor & Head, Department of Hematology, BSH&I and Dr. Shaoli Sarker, Associate Professor, Paediatric Neuroscience, BSH&I. The keynote presentations highlighted that BSH&I is currently providing treatment for SMA and Hemophilia patients through its own initiatives. Notably, the institute has introduced genetic analysis services for diagnosis of SMA, marking a first for any hospital in Bangladesh. Given that the treatment for rare diseases like SMA and Hemophilia is exceptionally expensive and often beyond the reach of parents. The participants of the roundtable discussion reached a consensus on the necessity of active multi-stakeholder participation and a significant role for the government in ensuring integrated medical management.
