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CPCT Launches Groundbreaking Initiative to Provide Lifelong Free Treatment for Children with Spinal Muscular Atrophy (SMA) in Karnataka

NextEdge Admin

15 Nov 2024

2 min 28 sec

NGO,rare diseases,Spinal Muscular Atrophy,Drugs Controller General of India

The Care and Protection of Children Trust (CPCT), a leading NGO dedicated to alleviating the impact of rare diseases, has launched a transformative initiative to support children with Spinal Muscular Atrophy (SMA) in Karnataka. This pioneering program will provide 50 children up to the age of 16 years with lifelong, free access to Risdiplam, an innovative oral treatment for SMA, through the CPCT's Free Medicine Access Programme (F-Map).

CPCT has partnered with Roche Pharma India to procure Risdiplam, the first and only drug approved by the Drugs Controller General of India (DCGI) for SMA treatment. The children will receive continuous care and access to the drug at Indira Gandhi Institute of Child Health (IGICH) in Bengaluru.

Mr. Lakshmi Kanthan, Chairman of CPCT, emphasized the importance of addressing the barriers to access for rare diseases and ensuring that every child receives the best available therapy. He expressed hope that the success of this initiative in Karnataka would serve as a model to expand the program to other states.

Shri Dinesh Gundu Rao, Honorable Minister for Health & Family Welfare, Karnataka, commended CPCT for its generous initiative, which will offer children with SMA a better chance at life. Shri Dr. Sharanprakash Patil, Honorable Minister of Medical Education, also praised the program as a groundbreaking financial assistance effort.

CPCT's F-Map initiative, funded through CSR contributions, aims to expand its support for children battling rare diseases, ensuring they have access to essential treatments that can significantly improve their quality of life.