Bengaluru: The medical education department is reaching out to corporate entities for support in treating children affected by ultra-rare genetic disorders.
Currently, 22 children are undergoing treatment for Lysosomal Storage Disorders (LSDs) at Indira Gandhi Institute of Child Health (IGICH) in Bengaluru, which is one of 13 centres of excellence for rare diseases identified across India.
Medical education minister Sharan Prakash Patil has initiated efforts to establish a framework for corporate collaboration to ensure consistent treatment for these children. “Partnerships with corporate entities could bring hope into the lives of these children,” Patil, who directed IGICH to utilise a portion of its corpus fund to cover immediate treatment expenses, said.
The treatment cost per child ranges from Rs 50 lakh to more than Rs 1 crore annually. The state govt already released Rs 76 crore to IGICH and submitted additional funding requests to the central govt.
Under the initiative, companies are encouraged to either adopt a child by covering the annual treatment cost or contribute financially to the cause. The department estimates that Rs 12-13 crore is needed yearly to treat all 22 children currently receiving care.
Since 2016, children affected by LSDs — which include conditions like Gaucher and Pompe disease — have received treatment at IGICH under the National Policy for Rare Diseases (NPRD), which provides grants to support treatment for such patients.