New Delhi, December 14, 2014 : .The Delhi High Court ordered the Centre Tuesday to provide funds for the costs of treating children with rare diseases.
It stated that the Centre can adjust the amounts from other funds including the National Disability Fund. Justice Rekha Palli stated that she believes the process should be initiated from the major hospitals in the country such as AIIMS.
A number of children with rare conditions such as Duchenne Muscular Dystrophy and Hunter’s Syndrome were being heard by the court.They asked for direction from the Centre so that they could receive uninterrupted, free treatment.The therapy can be very costly.
Hunter syndrome, which is rare and inherited, is when the body doesn’t properly break down sugar molecules.
Duchenne Muscular Dystrophy, (DMD), is another inherited condition of progressive muscle 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”.
jw/arm
#funds #rare #diseases #Delhi #Kerala #Malayalam #Mollywood #Rekha # Rekha #Siddharth # Siddharth #Delhi #New Delhi #Kerala
.
