India strengthens rare disease care under 2017 and 2021 policies; funding raised, duty relief expanded

India has put in place a national framework to manage rare diseases, the government said on Tuesday, citing measures launched under the National Health Policy, 2017, and reinforced by the National Policy for Rare Diseases, 2021. The framework places India among countries with a structured approach to rare disease management, according to the government.

Addressing a conference, Union Health Secretary Punya Salila Srivastava said the effort aims to understand stakeholder challenges, encourage innovation and develop new strategies to strengthen care.

She said the policy is being implemented through Centres of Excellence—premier tertiary care hospitals across the country—with the network expanded from 8 to 15, including two in northeast India, to bolster clinical care and support for patients. Srivastava said financial assistance under the policy has been enhanced to Rs 50 lakh, improving access to treatment for those diagnosed with rare diseases.

In view of rising therapy costs, she noted that life‑saving drugs have been exempted from basic customs duty, with additional exemptions announced in the recent Union Budget, and invited stakeholders to recommend more drugs for consideration. She also credited the Indian Council of Medical Research (ICMR) for promoting indigenous research and therapy development.

Dr Rajiv Bahl, Secretary of the Department of Health Research and Director General of ICMR, highlighted how rare disease care has advanced over three decades. In the 1990s, he said, diagnoses were extremely difficult and treatment options limited, often leaving patients and doctors helpless.

He added that the progress reflects a broader shift in healthcare priorities toward rare and genetic conditions and stressed the need for India‑specific models for diagnosis, treatment and prevention rather than relying entirely on Western approaches. He said ICMR is working to expand tools and resources for managing rare diseases.

Dr Sunita Sharma, Director General of Health Services, underscored the importance of strengthening systems for early diagnosis and comprehensive management. She called for integrating rare disease services across all levels of care to enable timely referrals and continuity of treatment through an efficient healthcare network.

Srivastava said the focus remains on innovation and collaboration to address challenges and further consolidate India’s rare disease management framework.