Rare diseases are estimated to affect 80 million Indians. Yet, rare diseases have been ignored in the public health agenda. Under the persistent advocacy movement, the National Rare Disease Policy was released in March 2021. Almost a year later, they are organizing the panel discussions to take a critical look at the representation and status of rare diseases in our current public health agenda. They are organizing two sessions to assess how to bring more equity in public health policy design and to evaluate methodologies to implement and strengthen the Indian rare disease registry.
For further details, I am attaching the concept notes for each session. The two sessions are given below:
- Session I: Equity in the representation of Rare Diseases in Public Health agenda. On February 19, 2022 at 4 — 6 pm (IST)
- Session II: Strengthening rare Disease Registry in India. On February 20, 2022 9:30 am ‑12 pm (IST).