Cure SMA Foundation of India is a parent led community, initiated in January 2014 by a small group of parents of children suffering from Spinal Muscular Atrophy, a rare genetic degenerative, life threatening, crippling neuromuscular disease. Parents of SMA warriors and adult SMA patients joined hands to raise awareness about the disease, building infrastructure for better management of the disease and advocating for broader access to available and approved treatment and clinical trials. In a few years, the community evolved, became incorporated and grew.
Cure SMA Foundation of India is a registered public charitable trust with pan India representation. Since the humble beginning of 10 families, we have grown to represent SMA families and individuals across the country. Each year we support SMA families through our newly diagnosed care and counselling, resource pool, SMA camps and supportive services, patient advocacy and many other direct family support services. We are extensively working to empower SMA patients and enabling them to access existing services and facilities. We have augmented our effort to bring the lifesaving SMA therapies to India.
Cure SMA Foundation of India & Philips Present
Webinar on Respiratory Care in SMA
1st August 2020, Saturday, 7pm to 9pm.
Genentech Receives FDA Approval of Evrysdi (risdiplam) for the Treatment of SMA.
Genentech, a member of the Roche Group, today announced that it has received approval from the U.S. Food and Drug Administration (FDA) for Evrysdi (risdiplam) to treat adults and children 2 months and older with spinal muscular atrophy (SMA).