The government on Tuesday said that the need for addressing rare diseases was first highlighted in the National Health Policy, 2017, and was subsequently institutionalized through the launch of the National Policy for Rare Diseases, 2021, which has positioned India among countries with a comprehensive national framework for rare diseases. Addressing a conference here, Union Health Secretary Punya Salila Srivastava said the core objective is to understand the challenges faced by stakeholders, encourage innovations, and generate new ideas for strengthening the management of rare diseases in the country.

She highlighted that the policy is implemented through Centres of Excellence (CoEs) , which are premier tertiary hospitals across the country.

The number of CoEs expanded from 8 to 15 over the years, including two CoEs in the north-east India, strengthening the national architecture for clinical care and support.

The Union Health Secretary also informed that the financial assistance under the policy has been progressively enhanced to Rs 50 lakh, enabling improved access to treatment for patients suffering from identified rare diseases.

Acknowledging the rising cost of therapies, she informed that the government has taken proactive steps to exempt life-saving drugs from basic customs duty, with further expansion announced in the recent Union Budget.

She also encouraged stakeholders to suggest additional drugs that may be considered for such exemptions.

Expressing appreciation for the contributions of the Indian Council of Medical Research, she highlighted its role in advancing indigenous research and development of therapies for rare diseases.

Dr Rajiv Bahl, Secretary, Department of Health Research (DHR) and Director General, Indian Council of Medical Research, reflected on the significant progress made in the field of rare diseases over the past three decades.

Source: NDTV - May 05,2026