The government today highlighted the need for innovation, early diagnosis, and stronger collaboration in rare disease management. Inaugurating the two-day National Conference on Rare Diseases in New Delhi today, Union Health Secretary Punya Salila Srivastava said, rare diseases require collective and sustained efforts from all stakeholders.

She said, the core objective of organizing this conference is to understand the challenges faced by stakeholders, encourage innovations, and generate new ideas for strengthening the management of rare diseases in the country. The Health Secretary noted that the need for addressing rare diseases was first highlighted in the National Health Policy, 2017.

She said that the policy is implemented through Centres of Excellence, which are premier tertiary hospitals across the country. The number of such Centres of Excellence has been expanded from eight to 15 over the years, including two in North-East India. Mrs Srivastava also informed that the financial assistance under the policy has been progressively enhanced to 50 lakh rupees, enabling improved access to treatment for patients suffering from identified rare diseases.