Description
Rare diseases (RD) cumulatively are estimated to afflict 70-90 million Indians. According to the government data, this number is comparable to the number of patients with common diseases such as diabetes and asthma, which are a public health priority. However RDs, due to the low prevalence of individual rare diseases, had often been missing from the public health agenda. Under the persistent advocacy movement, the Government of India took cognizance and released the National Policy for Rare Diseases (NPRD) on March 31, 2021.
A year since the release of NPRD 2021, on the International Rare Diseases Day 2022, we bring a riveting two-day session with eminent leaders in rare diseases and public health from Indian and abroad;
Session 1: Equity in the representation of Rare Diseases in Public Health agenda; February 19, 2022 at 4 pm – 6pm (IST)
Session 2: Strengthening Rare Disease Registry in India; February 20, 2022 at 9:30 am – 12 pm (IST)
Join us as we take a critical look at the representation of RDs in the health agenda and policy of the country. We ask questions as whether RDs have equal representation in the country’s public health agenda? If not, then how do we ensure it? We would also take a comprehensive look at the rare disease registry in India and examine the means to strengthen it. We would learn from the rare disease registry implementation experiences of APECÂ and explore the possibilities to adopt similar strategies in the Indian context.