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New Delhi: The Central government is set to launch a scheme to develop 12 indigenous drugs for eight rare diseases, health minister J.P. Nadda said on Monday. The programme aims to provide financial relief to many rare disease patients in the country.<\/p>\n<\/div>\n
\u201cAs part of India’s drive towards becoming a global leader in affordable healthcare, DHR is set to launch a programme developing 12 indigenous drugs for eight rare diseases. This initiative will aim to drastically reduce the cost of treatment for conditions like muscular dystrophy and Gaucher’s disease, making life saving therapies accessible and affordable for the masses,\u201d said Nadda.<\/p>\n<\/div>\n
A health ministry official later listed the diseases as: Familial Duchenne Muscular Dystrophy (DMD), Familial Hypercholesterolemia, Spinal Muscular Atrophy (SMA), Gaucher Disease, Pompe Disease, Fabry Disease, Niemann Pick Disease (NPD) and Alkaptonuria.<\/p>\n<\/div>\n
Currently, the National Policy for Rare Diseases (NPRD) lists 63 rare diseases. Financial support is provided of up to \u20b9<\/span>50 lakh <\/strong>per patient during the course of the treatment at centres of excellence (CoEs) for rare diseases.<\/p>\n<\/div>\n Since the launch of the policy in 2021, approx. 1,118 patients have benefited under NPRD.<\/p>\n<\/div>\n Health conditions classified under the policy are osteopetrosis that causes bone diseases; Fanconi Anemia that causes bone marrow failures, tumours and other abnormalities; Laron Syndrome that causes growth hormone insensitivity; and immune deficiency disorders such as severe combined immunodeficiency and Wiskot Aldrich Syndrome.<\/p>\n<\/div>\n The Union government has established 12 centres of excellence situated at premier government hospitals with facilities for diagnosis, prevention and treatment of patients with rare diseases.\u00a0<\/p>\n<\/div>\n Familial DMD is a genetic disorder that leads to progressive muscle weakness and degeneration, Familial Hypercholesterolemia is a disorder that causes LDL (bad) cholesterol level to be very high. The condition begins at birth and can cause heart attacks at an early age.<\/p>\n<\/div>\n SMA is a genetic disorder that causes progressive muscle weakness and atrophy.\u00a0<\/p>\n<\/div>\n Gaucher disease causes bone pain, anaemia, enlarged organs, a swollen, painful belly, and bruising and bleeding.<\/p>\n<\/div>\n Pompe Disease is a metabolic disorder that causes a buildup of glycogen in the body’s cells, damaging cells and impairing the function of organs and tissues, especially muscles.<\/p>\n<\/div>\n Fabry Disease is a rare X-linked lysosomal disorder that results in excessive deposition of lipids in the tissues.<\/p>\n<\/div>\n NPD is a group of inherited disorders that cause lipids to build up in the cells of the brain, liver, and spleen.<\/p>\n<\/div>\n Alkaptonuria, or black urine disease, is a very rare inherited disorder that prevents the body fully breaking down two protein building blocks (amino acids) called tyrosine and phenylalanine.<\/p>\n<\/div>\n Nadda, while highlighting the initiatives taken by his ministry in the first 100 days of the government, said a Centre for Evidence-Based Guidelines is ready for inauguration to help standardize medical practices nationwide, ensuring better standards of care.<\/p>\n<\/div>\n The department also launched the National One Health Mission (NOHM) for Pandemic Preparedness to manage zoonotic diseases and pandemics.<\/p>\n<\/div>\n The government also launched the Med-Tech Mitra online platform to help meditech innovators, startups and industry partners fulfill regulatory compliance.<\/p>\n<\/div>\n Inspired by India\u2019s landmark Chandrayaan-3 mission, the department has also undertaken \u201cFirst in the World\u201d challenge to fund 50 high-risk, high-reward innovations in biomedical research.\u00a0<\/p>\n<\/div>\n \u201cThese initiatives represent transformative steps in healthcare innovation, pandemic preparedness, and the development of indigenous medical solutions, contributing to a healthier, more resilient and Atmanirbhar Bharat,\u201d he said.<\/p>\n<\/div>\n The establishment of the \u201cResearch to Action\u201d vertical in DHR will ensure that cutting-edge health research is seamlessly integrated into policy and practice.<\/p>\n<\/div>\n The government said that Viral Research and Diagnostic Laboratories (VRDLs) across the country have been strengthened through funding support. \u201cSix of these VRDLs are being converted into Integrated Research and Diagnostic Laboratories (IRDLs) covering larger domain of infectious diseases. Construction of Zonal laboratories of National Institute of Virology (NIV) has also been initiated,\u201d it said.<\/p>\n<\/div>\n<\/div>\n Catch all the Business News, Politics news,Breaking NewsEvents andLatest News Updates on Live Mint. Download TheMint News App to get Daily Market Updates.<\/p>\nThe rare diseases<\/h2>\n
Other government initiatives<\/h2>\n