Union Minister of State for Health and Family Welfare Anupriya Singh Patel announced that up to Rs 50 lakhs per patient has been allocated for the treatment of rare diseases.1✔ ✔Reliable source
Details of the National Policy on Rare Diseases
) The Ministry of Health and Family Welfare launched the National Policy for Rare Diseases (NPRD) in March 2021. Since then, “a total of 1,118 patients have benefited,” Patel said. “Financial support up to Rs 50 lakhs per patient is provided for treatment at notified centres of excellence (CoE) for rare diseases,” the minister added. As per the recommendation of the Central Technical Committee for Rare Diseases (CTCRD), currently 63 rare diseases are included in the NPRD, Patel said.
There are also 12 Centres of Excellence (CoEs) where patients can register for financial assistance. The CoEs include top-level government tertiary hospitals that have facilities for diagnosis, prevention and treatment of rare diseases.
Understanding rare diseases
There are about 7,000 known rare diseases, affecting about 8 per cent of the world’s population. About 75 per cent of rare disease patients are children. The NPRD identifies and classifies rare diseases into three groups: disorders that can be managed with a one-time curative treatment; those that require long-term or lifelong treatment with relatively less treatment cost; and those that need definitive treatment but the challenges are to make optimal selection of patients for the benefit, very high cost and lifelong therapy. “The Ministry of Health and Family Welfare has obtained exemption from the Department of Expenditure on Goods and Services Tax (GST) and Basic Customs Duty on imported medicines for Rare Diseases for individual use and through the CoE,” Patel said.
He further informed that a National Consortium for Rare Disease Therapies Research and Development (NCRDTRD) has also been established to streamline research activities on rare diseases.
Advertisement
Reference:
- Details of the National Policy on Rare Diseases – (https://pib.gov.in/PressReleseDetailm.aspx?PRID=2043516)
Source-IANS
