India Establishes Comprehensive Framework for Rare Diseases Management
India Has Comprehensive National Rare Diseases Framework, Says Government
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The Indian government has implemented a comprehensive National Policy for Rare Diseases, initiated in 2021, to improve the management of rare diseases. Union Health Secretary Punya Salila Srivastava highlighted the expansion of Centres of Excellence and increased financial assistance for treatments, aiming to enhance access to care for patients across the country.
- 01India's National Policy for Rare Diseases was launched in 2021.
- 02The number of Centres of Excellence (CoEs) has increased from 8 to 15.
- 03Financial assistance for treatment has been raised to ₹50 lakh (roughly $60,000 USD).
- 04Life-saving drugs are exempt from basic customs duty to reduce therapy costs.
- 05The Indian Council of Medical Research is advancing indigenous research for rare diseases.
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On Tuesday, the Indian government reaffirmed its commitment to addressing rare diseases through the National Policy for Rare Diseases, launched in 2021. Union Health Secretary Punya Salila Srivastava stated that the policy aims to tackle the challenges faced by patients and healthcare providers. The initiative has led to the expansion of Centres of Excellence (CoEs) from 8 to 15, including two in northeastern India, enhancing clinical care and support. Financial assistance for patients has been increased to ₹50 lakh (approximately $60,000 USD), improving access to treatment. The government has also exempted life-saving drugs from basic customs duty and is open to suggestions for additional exemptions. Dr. Rajiv Bahl, Secretary of the Department of Health Research, noted the significant advancements in rare disease management over the past three decades, emphasizing the need for India to develop a unique model tailored to its context. Dr. Sunita Sharma, Director General of Health Services, highlighted the importance of integrating rare disease services into healthcare systems for timely diagnosis and care continuity.
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The National Policy for Rare Diseases aims to improve access to treatment and care for patients suffering from rare diseases in India, potentially saving lives and enhancing quality of care.
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