SMArtCon2024 to focus on building a sustainable rare-disease ecosystem

SMArtCon2024, a two-day National Conference on Spinal Muscular Atrophy (SMA), is going to be held on August 24-25, 2024, in Gurugram (Delhi-NCR). The event, organized by Cure SMA Foundation of India, has the theme of “Building a sustainable Ecosystem for SMA and Other Rare Diseases.”

It aims to bring together patients, caregivers, clinicians, researchers, and therapists to share insights about building a sustainable rare disease ecosystem, indigenous research in India, the latest advancements such as new disease-modifying therapies, and multidisciplinary supportive care for SMA and other rare diseases.

Moumita Ghosh, Co-founder and Director, Family Support and Events, Cure SMA Foundation of India, “SMA is a rare and genetically inherited neuromuscular disease that robs people of physical strength by affecting the motor nerve cells in the spinal cord, taking away the ability to walk, eat, or breathe. It is the number one genetic cause of death for infants. Around 4,000 children are born every year in India with SMA. SMArtCon2024 is designed to enhance knowledge on SMA, the significance of early diagnosis and early intervention, the importance of multidisciplinary supportive care and management, knowledge and understanding of available treatments, the importance of indigenous research and brainstorming innovative solutions to build a sustainable healthcare ecosystem for SMA and other rare diseases.”

Dr Sheffali Gulati, Head of Pediatric Neurology, AIIMS Delhi, is the Chairperson of the advisory board for SMArtCon 2024. Dr Ratna Dua Puri, Chairperson of the Institute of Genomics at Sir Gangaram Hospital is the Chairperson of the SMArtCon 2024 Scientific Committee.

SMArtCon2024 is being held in collaboration with the Academy of Child Neurology, Society for Indian Academy of Medical Genetics, Tata Institute of Genetics and Society and Artemis Hospital (Gurugram).

The conference will host two symposiums, with 12-15 sessions each in these two days. The Symposium for clinicians and therapists focuses on the Genetic and neurological basis of SMA, multidisciplinary care approaches, advances in disease-modifying therapies, latest research in India, clinical trials and medical & research ethics.