BENGALURU: Medical Education and Skill Development Minister Dr Sharan Prakash Patil has urged corporate houses, to adopt kids suffering from ‘ultra-rare’ diseases and support their treatment through CSR funding.
This comes as hundreds of children across India — especially in Karnataka — are diagnosed with rare and ultra-rare genetic disorders, including lysosomal storage disorders (LSDs) such as Gaucher and Pompe. These conditions often require expensive, long-term treatment, costing between Rs 50 lakh to over Rs 1 crore per child annually.
He appealed to adopt at least one child per year by contributing Rs 50 lakh, ensuring continued access to life-saving care.
Under the National Policy for Rare Diseases (NPRD), the Centre grants such treatments. Since 2016, the Indira Gandhi Institute of Child Health (IGICH) in Bengaluru, one of the 13 Centres of Excellence for Rare Diseases in the country, has been treating children affected by such disorders. Currently, there are 22 children undergoing treatment at IGICH with Rs 50 lakh allocated for each. So far, the state government has released Rs 76 crore to the institute, while additional funding proposals have been sent to the Centre.
Patil has directed Dr KS Sanjay, Director of IGICH, to use a portion of the institute’s corpus fund to meet the treatment expenses.