Rare diseases matter: Delhi HC directs centre to set up NRDF, says right to health is integral part of 'right to life'

New Delhi [India], October 5 : While disposing of a batch of more than 100 petitions moved on behalf of patients suffering from Rare diseases, the Delhi High Court said that the Right to health is an integral part of the right to life.
Justice Prathiba M Singh on Friday directed the Central Government to set up the National Rare Disease Fund (NRDF) for which Rs. 974 Crores will be allocated.
The bench said that this fund should be utilised for the treatment of persons suffering from rare diseases.
It is also directed that the disbursement of funds will be monitored by a mandatory monthly and to identify delays if any. The first meeting should be scheduled within 30 days.
A detailed copy of the judgement is yet to be uploaded. The High Court has passed a number of directions.
The High Court directed that the National Rare Disease Committee formed on May 25, 2023, shall continue to work for the next five years.
"The Union government shall create a national fund for rare diseases and a fund of Rs. 974 Crore as per the recommendation of NRDC and pending approval of the Ministry of Health shall be allocated for the year 2024-25 and 2025-26," the High Court ordered on Friday.
While pronouncing the judgement on 105 petitions, the High Court said Treatment and medicine should be provided to all patients suffering from rare diseases.
The fund shall not be lapse or refunded on the grounds of non-utilisation.
The High Court was dealing with petitions seeking free treatment to patients suffering from Rare Diseases.