Rare disease patients’ advocacy groups have appealed to Prime Minister Narendra Modi, and Defence Minister Rajnath Singh, the chairman of the Bharatiya Janata Party’s (BJP) manifesto committee, seeking inclusion for sustainable funding support in the party’s election manifesto.
In a two-page letter, patients and caregivers said that rare diseases, especially chronic and ultra-rare conditions, including Lysosomal Storage Disorders (LSD) such as Gaucher disease, Pompe disease, MPS I and II, Neiman Pick disease, and Fabry disease, present a unique set of challenges.
The group noted that the National Policy for Rare Diseases, 2021 has been instrumental in providing a framework for support, leading to life-saving interventions and improved outcomes for affected individuals.
