Ensure funds for treatment of kids with rare diseases: Delhi HC directs Centre

Also Read: HC raps Center over non-utilization of rare diseases fund

The court was hearing a batch of pleas pertaining to children suffering from rare diseases like Duchenne Muscular Dystrophy (DMD) and Hunter's syndrome, seeking direction to the Centre to provide them uninterrupted and free of cost treatment as the therapy is very expensive.

Hunter syndrome is a rare, inherited disorder in which the body does not properly digest (break down) sugar molecules, while Duchenne Muscular Dystrophy (DMD) is also an inherited disorder of progressive muscular weakness.

Senior advocate Siddharth Luthra, appearing on behalf of the petitioner, submitted that various public sector undertakings are contributing an amount of Rs 1,200 crore annually towards Corporate Social Responsibility (CSR).

The court said that the Centre can impress these PSUs to utilise these funds to online crowdfunding portals created for the treatment of children with rare diseases.

In September, the court had asked the Central government to take steps for transferring Rs 63 crore from the crowdfunding account lying with the Kerala High Court to that of the rare diseases account.

Today, the court said that it will be open for the Centre to pursue the application before the Kerala High Court for transfer of this fund.

Earlier on December 8, the court had pulled up the Centre for not utilising the funds collected to provide assistance for the treatment of children suffering from rare diseases, saying it will not permit these kids to "die despite funds being available".

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