Govt Hosts National Conference on Rare Diseases to Boost Care and Innovation

Addressing the gathering, Union Health Secretary Punya Salila Srivastava said the conference seeks to understand stakeholder concerns and generate new ideas to improve rare disease care. She noted that rare diseases were first recognised in the National Health Policy, 2017, and later institutionalised through the National Policy for Rare Diseases, 2021, placing India among countries with a structured framework in this domain.

She highlighted that financial assistance under the policy has been increased to ₹50 lakh, improving access to treatment. To reduce the burden of high-cost therapies, the government has also exempted certain life-saving drugs from basic customs duty and invited suggestions for expanding this list. She further stressed the importance of awareness campaigns and capacity-building workshops across states, urging participants to identify more districts for expansion.

Emphasising early diagnosis and prevention, Srivastava underlined the role of genetic testing and informed clinical management. She said initiatives like the UMMID programme and NIDAN Kendras are strengthening genetic counselling services, with around 1,800 patients already receiving treatment support. She also acknowledged collaboration with regulatory bodies and other ministries to improve access to therapies.

Dr. Rajiv Bahl, Secretary, Department of Health Research and Director General of ICMR, highlighted progress in rare disease research, including the use of repurposed drugs and advancements in gene therapy. He said India is moving closer to developing advanced treatments, citing emerging technologies like CAR-T cell therapy.

Director General of Health Services Dr. Sunita Sharma also emphasised the need for stronger health systems, early diagnosis, and integrated care networks to ensure timely treatment and continuity of care for rare disease patients.

- ANI