✨ The SMART Summit 2025, a one-day event brought together clinicians, researchers, policymakers, industry leaders, and patient advocacy groups (PAGs) to advance Spinal Muscular Atrophy (SMA) research and care in India.
Discussions covered research and clinical gaps, innovations in diagnostics and therapeutics, regulatory pathways, and the role of PAGs in advocacy.
The keynote session featured Dr. Rakesh Mishra on India’s rare genetic disease landscape, Dr. K. Thangaraj (CCMB-TIGS) on population genomics, Dr. Taruna Madan Gupta (Indian Council of Medical Research (ICMR)) on its rare disease research, and Dr. B.S. Charan (MoHFW) on Centres of Excellence and national policies. Dr. V K Paul discussed NITI Aayog Official role in promoting therapies. Moumita Ghosh outlined the mandate of the CureSMA Foundation of India. The inaugural talk by Dr. Radha Ramadevi provided a comprehensive overview of SMA, including its symptoms, classifications, and genetic factors.
The Diagnostics and Screening session, led by Dr. Ratna Dua Puri, Dr. Seema Thakur, Dr. Shivranjani Moharir, Dr. Kausik Mandal, Dr. Swasti Pal and Dr. Ramesh Konanki, covered newborn and carrier screening, prenatal testing, genetic counseling, and cost-effective diagnostic assays.
The Therapeutics and Disease Management session, led by Dr Sheffali Gulati, Dr. Mary Iype, Dr. Jonaki Sen, Dr. Vykunta Raju K N, Dr. Arun Shastry discussed SMA treatment options, pharmaceutical regulations, drug accessibility, and regulatory pathways.
The Adaptive Research Towards SMA session, led by Dr. Giriraj Ratan Chandak, Dr. Sudha Bhattacharya, Dr Rajesh Iyer, Dr. Arkasubhra Ghosh, Dr. Savita Rangarajan, Dr. Vasanth Thamodaran, Dr. Bishakh Bhattacharya, Prabhat Sinha and Nandini Muralidharan, explored how emerging technologies and concepts from other rare genetic disorders can be applied to SMA, with discussions on mRNA and gene therapies, alternative model systems, assistive devices, and AI in research.
A special highlight was the SMA Warriors session, where professionals like Dr. Abhinand (bioinformatician), Bhavana (physiotherapist), and connoisseurs Omprakash and Deeksha shared their journeys, offering an inspiring perspective on life with SMA.
The summit concluded with a vote of thanks and a brainstorming session on future collaborations and the way forward.
The summit was organised by Tata Institute for Genetics and Society, Cure SMA Foundation of India, Indian Institute of Technology, Kanpur and National Centre for Biological Sciences (NCBS), Bengaluru ✨
Catch a few glimpses from the event below.
