Bangalore, November 14, 2024: Care and Protection of Children Trust (CPCT), a leading NGO dedicated to combating rare diseases, announced today a groundbreaking initiative to provide free, lifelong access to Risdiplam, a revolutionary treatment for Spinal Muscular Atrophy (SMA), to 50 children in Karnataka, aged 16 and under.
In partnership with Roche Pharma India, CPCT’s Free Medicine Access Programme (F-Map) will ensure these children receive continuous care and treatment at Indira Gandhi Institute of Child Health (IGICH), Bengaluru. Risdiplam, the first and only oral treatment for SMA approved by the Drugs Controller General of India (DCGI), offers a significant advantage by allowing convenient home administration.
Key Highlights:
- Lifelong Support: The 50 children will receive free Risdiplam throughout their lives.
- Enhanced Access: The initiative addresses the challenge of accessing advanced treatments for rare diseases in India.
- Holistic Care: CPCT’s F-Map provides comprehensive support, including medical care and counseling.
- Expanding Impact: CPCT aims to expand the F-Map program to reach more children with rare diseases across India.
Government Support:
- Shri Dinesh Gundu Rao, Minister for Health & Family Welfare, Karnataka, expressed gratitude to CPCT for its commitment to improving healthcare access for children with SMA.
- Shri Dr Sharanprakash Patil, Minister of Medical Education – Health & Family Welfare, Karnataka, commended CPCT’s initiative as a groundbreaking step towards better healthcare for rare disease patients.
About Spinal Muscular Atrophy (SMA):
SMA is a rare genetic disorder that weakens muscle strength and motor function, significantly impacting quality of life and life expectancy. Early intervention with effective treatments like Risdiplam can significantly improve outcomes for children with SMA.
About CPCT:
Care and Protection of Children Trust (CPCT) is a dedicated NGO working to ensure that children across India have access to vital treatments and care. With a focus on rare diseases, CPCT operates in states like Karnataka, Tamil Nadu, and Kerala, providing crucial support and advocacy for children and their families.
