Union Ministry of Health and Family Welfare Inaugurates Conference on Rare Diseases

Union Ministry of Health and Family Welfare today inaugurated the 2-day National Conference on Rare Diseases in New Delhi, being held on 5th and 6th May 2026, marking a significant step towards strengthening India’s response to the challenges posed by rare diseases.

Addressing the gathering Secretary, Department of Health Research (DHR) and Director General, Indian Council of Medical Research, Dr. Rajiv Bahl, reflected on the significant progress made in the field of rare diseases over the past three decades. He noted that in the 1990s, identifying a patient with a suspected rare disease often led to a sense of helplessness, as diagnosis was extremely difficult and treatment options were virtually unavailable. Today, while even financial support of ₹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. Sunita Sharma, Director General of Health Services, emphasized the importance of strengthening health systems for early diagnosis and comprehensive management of rare diseases. She highlighted the need to integrate rare disease services across different levels of healthcare, ensuring timely referral and continuity of care through an efficient network of facilities.

She also underscored the critical role of capacity building of healthcare professionals, expansion of screening programmes, and adoption of standardized treatment protocols. She noted that enhancing awareness at both community and provider levels will be key to improving early detection and outcomes for patients affected by rare diseases. (UPDATED ON 5TH MAY 2026)