SMArtCon2024: Cure SMA Foundation to host national conference on Spinal Muscular Atrophy

New Delhi: The national conference, SMArtCon2024, dedicated to Spinal Muscular Atrophy (SMA) and other rare diseases, is set to take place in Gurugram (Delhi-NCR) on August 24-25, 2024. Organized by the Cure SMA Foundation of India, the event will bring together a diverse group of stakeholders including patients, caregivers, clinicians, researchers, and therapists.

With the theme “Building a Sustainable Ecosystem for SMA and Other Rare Diseases,” the conference aims to foster collaboration and knowledge sharing to improve the lives of those affected by these conditions.

Moumita Ghosh, Co-founder and Director of Family Support & Events at the Cure SMA Foundation of India, highlighted, “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, significance of early diagnosis & early intervention, importance of multidisciplinary supportive care & management, knowledge and understanding of available treatments, importance of indigenous research and brainstorming innovative solutions to build a sustainable healthcare ecosystem for SMA and other rare diseases,” he added.

The conference will feature two symposiums, offering over 12-15 sessions each, running in parallel over the two days. These will cater to both the patient community and the medical professionals involved in their care. The patient and caregiver symposium will focus on daily care management, navigating treatment options, and building support networks. Meanwhile, the symposium for clinicians and therapists will delve into the genetic and neurological basis of SMA, advances in disease-modifying therapies, and the latest research developments in India, alongside discussions on clinical trials and medical ethics.

Dr. Sheffali Gulati, Head of Pediatric Neurology at AIIMS Delhi, serves as the Chairperson of the advisory board for SMArtCon2024, while Dr. Ratna Dua Puri, Chairperson of the Institute of Genomics at Sir Ganga Ram Hospital, chairs the Scientific Committee. The event is being held in collaboration with several prestigious organizations, including the Academy of Child Neurology, the Society for Indian Academy of Medical Genetics, the Tata Institute of Genetics and Society, and Artemis Hospital in Gurugram.

The conference is expected to attract a significant number of participants, including parents of SMA patients, government representatives, healthcare professionals, researchers, and patient advocates from both India and abroad. It will take place at the Lemon Tree Hotel, Sector 60, Gurugram.