Bangalore, 14th November 2024: Care and Protection of Children Trust (CPCT), a leading NGO committed to alleviating the burden of rare diseases, today announced the launch of a groundbreaking financial assistance initiative aimed at supporting children diagnosed with Spinal Muscular Atrophy (SMA). As part of this landmark program, 50 children up to the age of 16 years in Karnataka will receive lifelong free of cost access to Risdiplam, a revolutionary oral treatment for SMA.
CPCT has signed an agreement with Roche Pharma India to procure Risdiplam, the first and only drug approved by the Drugs Controller General of India (DCGI) for the treatment of SMA. Under CPCT’s Free Medicine Access Programme (F-Map), children will receive continuous care and access to treatment at Indira Gandhi Institute of Child Health (IGICH), Bengaluru.
Mr. Lakshmi Kanthan (Chairman – CPC Trust)
“At CPC Trust, our mission is to ease the burden of rare diseases for children and families who often have limited resources. We strongly believe that every child deserves to be treated with the best available therapy and are constantly working towards addressing access barriers. We are sure that with the free drug support of Risdiplam, a disease modifying therapy which can be administered orally in the comfort of one’s home, these children will benefit immensely. We hope that this partnership in Karnataka will serve as a role model to scale the program in other States too.”
Shri Dinesh Gundu Rao (Honorable Minister for Health & Family Welfare, Government of Karnataka)
“We are thankful to CPCT for coming forward to support 50 children suffering from SMA in Karnataka with lifetime drug support. This landmark program will pave the way for a brighter future for these children of Karnataka by giving them a fair and solid chance to battle a debilitating condition like SMA. Programmes like these are in line with the state government’s healthcare vision of providing best-in-class care and treatment for citizens of Karnataka.”
Shri Dr Sharanprakash Patil (Honorable Minister of Medical Education Health & Family Welfare, Government of Karnataka)
“We are thankful to CPCT for their generous funding towards supporting these children battling SMA. This is a first-of-its-kind financial assistance program anywhere in the country. We are delighted that SMA patients in Karnataka will stand to benefit Immensely.”
The Free Medicine Access Programme (F-Map) is an initiative specially curated by CPCT through funding received under CSR for treatment of rare conditions. In line with its mission to provide holistic support for children battling rare diseases, CPCT plans to expand the F-Map initiative to cover additional children in the near future. The NGO by rare diseases in India.
A Lifelong Commitment to Treating SMA
SMA is a rare genetic disorder that severely impacts muscle strength and motor functions, often leading to life-threatening complications if untreated. In India, access to advanced treatment options for rare conditions remain a challenge. By leveraging strategic partnerships and creating innovative solutions like F-Map, CPCT is bridging the gap to improve healthcare access for underserved communities,
City Today News 9341997936
City Today News 