DELHI-NCR/ August 14, 2024: 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."

SMArtCon2024 will bring together patients, caregivers, clinicians, researchers, and therapists to share insights about building a sustainable rare-disease ecosystem, indigenous research in India, latest advancements such as new disease-modifying therapies, and multidisciplinary supportive care for SMA and other rare diseases.

Said Moumita Ghosh, Co-founder & Director, Family Support & 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, 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.”

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

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 SMArtCon 2024 Scientific Committee.

The conference will host two symposiums, with 12-15 sessions each in these two days, running parallelly for patients and families as well as clinicians, researchers and therapists. The focus areas of Symposium for SMA Patients and Caregivers include themes like managing daily care and challenges, navigating treatment options, building support networks and patient and caregiver experiences and stories. The Symposium for Clinicians and Therapists focuses on Genetic and neurological basis of SMA, multidisciplinary care approaches, advances in disease-modifying therapies, latest research in India, clinical trials and medical & research ethics.

Dozens of participants are expected to attend the Conference including parents of patients, government delegates, clinicians, researchers, renowned doctors, physiotherapists, orthotics experts, medical college students and patient advocates from the US and Europe.

The event is being held at Lemon Tree Hotel, Sector 60, Gurugram. For more information, visit https://curesmaindiasmartcon.com/

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About Spinal Muscular Atrophy

SMA is a genetic disorder characterized by weakness and wasting (atrophy) in muscles used for movement (skeletal muscles). It is caused by a loss of specialized nerve cells, called motor neurons, that control muscle movement. The muscle weakness worsens with age.

There are four types of spinal muscular atrophy. The types differ in age of onset and severity of muscle weakness. SMA mostly affects infants and young children. Babies with severe type of SMA type 1 do not even live up to see their 1st or 2nd birthday.

Though children with type 2 and 3 live up to teenage and adulthood, they are confined to wheelchair and go through scoliosis of spine and poor lung function. These children are intellectually quite sharp and perform brilliantly despite all odds. The Cure SMA Foundation has as members three SMA type 2 patients who are National Toppers of CBSE in class X & XII. Some have even got admission in IITs and MBBS purely on merit, while others have carved out successful careers in law, banking, etc.

About Cure SMA Foundation

A parent-led Non-Profit Organization, the Cure SMA Foundation ( www.curesmaindia.org ) has more than 1,800 SMA patients registered from all over India. Its mission is to build a sustainable ecosystem, for SMA and other rare diseases by bringing treatment, cure and standard of care protocols for SMA, from advanced countries to India, making healthcare accessible & affordable for all, and creating awareness about SMA and the significance of genetic screening thereby reducing disease burden through prevention and awareness.