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State government committed to ensuring treatment to children with Rare diseases- says Minister Jauramajra

Date:

Chandigarh, October 16:

Health and Family welfare Minister Chetan Singh Jauramajra today categorically said that the state government is committed for providing treatment for Rare diseases to the children and there is no denial from the stays government for this noble cause.

In a statement, the Minister said that National Policy for rare Diseases has been notified by Government of India on March 30, 2021 and latest guidelines have been issued on August 11 this year. He said that as per this policy NPRD treatment cost provision of Rs 50 lakh/Patient, irrespective of any Group of Rare disease under the policy has been made. He said that this provision is irrespective of any economic category of patient.

The Minister said that PGIMER Chandigarh has been designated as centre of Excellence (C0E) under the NPRD since last year 2021, for providing this treatment to children suffering from Rare Diseases, aside further research in this field. He said that Officials from PGI Chandigarh have informed that a committee has been constituted to examine these cases of RD, also a Nodal officer has been appointed to facilitate their treatment.

He said that Department of Health, Punjab is in Liaison with PGI authorities and have informed them of uninterrupted treatment be continued to these already treatment seeking patients, under RBSK program. PGI Doctors have informed that they have started registering these patients on NPRD registry, and assured that no patients treatment will be discontinued. He also slammed the opposition for misleading the people in this sensitive issue.

Secretary Health and Family welfare department, Punjab, Ajoy Sharma informed that state government is committed to safeguard, the treatment to these patients, of Rare diseases, mainly children, from the state funds, as long as the other provisions available are not sourced. He has instructed State Program officer RBSK to call the parents of these children.

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