Union Ministry of Health and Family Welfare inaugurated the two-day National Conference on Rare Diseases in New Delhi on May 5–6, 2026, aimed at strengthening India’s response to rare disease diagnosis, treatment, research, and patient support.

Addressing the conference, Punya Salila Srivastava, Union Health Secretary, said the event was organised to understand stakeholder challenges, encourage innovation, and generate ideas to improve rare disease management in India.

She noted that rare diseases were first formally recognized under the National Health Policy 2017 and later institutionalised through the National Policy for Rare Diseases, 2021, giving India a structured national framework for rare disease care.

Highlighting progress under the policy, she said the number of Centres of Excellence (CoEs) has expanded from eight to 15, including two centres in Northeast India, strengthening the country’s clinical support network. She also stated that financial assistance under the policy has been increased to Rs 50 lakh per patient to improve treatment access.

The Union Health Secretary added that the government has exempted several life-saving drugs from basic customs duty and is open to further expanding the list based on stakeholder recommendations.

She also emphasized the importance of awareness programmes, genetic analysis, early diagnosis, and preventive healthcare approaches. According to her, nearly 1,800 patients have already received support under the rare disease policy through initiatives such as the Unique Methods for Management of Inherited Disorders (UMMID) programme and NIDAN Kendras.

Rajiv Bahl, Secretary, Department of Health Research and Director General of the Indian Council of Medical Research(ICMR), said India has made significant progress in rare disease care over the last three decades.

He said, “Today, while even financial support of Rs 50 lakh per patient may seem insufficient given the high cost of therapies, it represents remarkable progress that the country is now able to meaningfully support children affected by rare diseases.”

Dr. Bahl stressed the need for India to develop a context-specific model for diagnosis, treatment, and prevention rather than relying entirely on Western healthcare systems. He highlighted the role of digital technologies, social media, AI, genetic counselling, and antenatal diagnosis in improving early detection and preventive care.

He further stated that ICMR is working on indigenisation of therapies, domestic manufacturing of affordable alternatives, repurposed drugs, and advanced technologies such as gene therapy and CAR-T cell therapy in collaboration with institutions including the Department of Biotechnology and Council of Scientific and Industrial Research.

Sunita Sharma, Director General of Health Services, highlighted the need to strengthen healthcare systems for early diagnosis, referral networks, screening programmes, and standardized treatment protocols for rare disease management.

The conference includes technical sessions on genomic technologies, affordable therapies, patient-centric care models, and research collaborations, with participation from Centres of Excellence and healthcare stakeholders across the country.