Since 2016, children in Karnataka with rare diseases have received treatment at Bengaluru's Indira Gandhi Institute of Child Health, a recognized Center of Excellence, supported by grants under the National Policy for Rare Diseases
Published Apr 06, 2025 | 8:23 PM ⚊ Updated Apr 06, 2025 | 8:23 PM
Medical education department seeks corporate support for treatment of children with ultra-rare diseases
Synopsis: The Karnataka government is seeking corporate support to cover high treatment costs for children with ultra-rare genetic disorders like Gaucher and Pompe diseases. Minister Dr. Sharan Prakash Patil is leading efforts to form partnerships, aiming to provide timely, effective care for children diagnosed with Lysosomal Storage Disorders, with annual treatment costs ranging from ₹50 lakh to over ₹1 crore per child
In a bid to support children suffering from ultra-rare genetic disorders, the Karnataka government is seeking corporate assistance to help cover the high treatment costs.
With many conditions requiring annual treatment expenses ranging from ₹50 lakh to over ₹1 crore per child, the government is aiming to form partnerships with corporate entities through a structured initiative.
Dr. Sharan Prakash Patil, Minister for Medical Education, Skill Development and Livelihood, has taken the lead to establish a framework for collaboration.
His efforts focus on providing effective, timely, and accessible treatment for children diagnosed with Lysosomal Storage Disorders (LSDs), which include conditions such as Gaucher and Pompe diseases. These disorders, although rare, have been increasingly diagnosed in Karnataka.
The National Policy for Rare Diseases (NPRD) provides financial support through grants for the treatment of such disorders. Since 2016, children in Karnataka have been receiving treatment at the Indira Gandhi Institute of Child Health (IGICH) in Bengaluru, a recognised Center of Excellence for Rare Diseases.
Currently, 22 children are undergoing treatment at IGICH, with each child’s treatment costing anywhere from ₹50 lakh to over ₹1 crore annually.
The Karnataka government has already released ₹76 crore to support these children, and additional funding requests are being made to the central government.
To ensure the sustainability of this initiative, Minister Patil is encouraging corporate entities to step forward through their Corporate Social Responsibility (CSR) programs.
The government’s appeal asks companies to either adopt a child and cover their treatment costs for a year or contribute financially to the cause. Dr. KS Sanjay, the Director of IGICH, has also been directed to utilise a portion of the institute’s corpus fund to help alleviate treatment costs.
Minister Patil expressed confidence that the initiative would receive a positive response from the corporate sector, bringing hope to the families of children suffering from these ultra-rare diseases.
Treatment for Lysosomal Storage Disorders (LSDs) costs between R₹20–40 lakh annually per child.
Currently, 22 children in Karnataka are undergoing treatment, with an estimated ₹12–13 crore required each year for their care.
The Karnataka Medical Education Department has appealed to corporate houses to adopt at least one child per year, contributing ₹50 lakh to ensure life-saving treatment.
(Edited by Ananya Rao)
