Dr Vinod K Paul, Member (Health), NITI Aayog on Wednesday said that rare diseases are estimated to collectively affect close to 90 million Indians, making them both a health and societal challenge.
He emphasized that with only a fraction of the 7,000 rare diseases having approved therapies, indigenous manufacturing, stronger registries, and multi‑ministerial coordination must be prioritized.
Addressing the National conference on ‘Rare Diseases’, organized by FICCI, jointly with NITI Aayog and the Indian Medical Parliamentarians’ Forum (IMPF), Dr Paul underlined that collective resolve must ensure faster diagnosis, equitable treatment, and an improved quality of life.
Reference was made to the efforts undertaken since 2023, wherein it was shared that NITI Aayog, experts, and regulators prioritized 13 high‑burden disorders, with significant progress achieved in making five drugs for seven diseases available at drastically reduced prices.
He also highlighted the importance of collaboration across academia, industry, and government so that quality and affordable treatments can be developed and research can be translated into lasting cures.
He further noted that the principle of “leave no one behind” must serve as the guiding vision.