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Treatment of rare diseases: Centre sanctions Rs 1.5 crore for Kerala

Kochi: The Central government informed the Kerala High Court that it has sanctioned Kerala Rs 1.5 crore for the treatment of people suffering from rare genetic diseases.

The fund has been allotted with a strict condition that it must be utilised only for the recommended purpose.

Earlier, the High Court ordered that the central government’s share must be given within 15 days.

A division bench including Chief Justice S. Mani Kumar and Justice Shaji P. Chali ordered to open a special account to handle the fund for the treatment of people suffering from rare diseases.

The court issued the order while considering a plea submitted by Lysosomal Storage Disease Support Society. Following this, the state government informed the HC that a special bank account will be opened for fund transactions.

The HC directed the state government to inform the centre and file a request to transfer the allotted fund to this bank account. The matter will be considered again on March 16. 

The state government has allotted Rs 50 lakh under the ‘We Care’ project for the treatment of people suffering from rare diseases.

The state government sought more clarification on the utilisation of central funds. Meanwhile, the HC strictly warned that funds from the centre should not be used for purposes other than the treatment of rare diseases.

High Court Senior Advocates Association, Advocate Association and Federation of Women Lawyers informed the court that they will raise funds for the purpose. The High Court staff association also expressed willingness to make donations to the ‘We Care’ project. 

The state government must inform the details including fund utilisation to the centre within a week. Centre must give a reply regarding this within two weeks.

https://english.mathrubhumi.com/health/health-news/treatment-of-rare-diseases-centre-sanctions-rs-1-5-crore-for-kerala-1.4595742

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