On MPS Awareness Day 2026, Rajya Sabha Deputy Chairman Harivansh launched “SHAURYA: A Father's Promise” at Sir Ganga Ram Hospital, New Delhi.
Authored by Saurabh Singh of Rare Diseases India Foundation, the book narrates Shaurya’s fight against MPS II (Hunter Syndrome) and urges a comprehensive national rare disease policy.
Clinicians from Sir Ganga Ram Hospital, ICMR and AIIMS spoke, stressing timely diagnosis, treatment access and equitable care for rare disease patients.
Shaurya, who died in 2025 at 13, is portrayed as a beacon of hope, inspiring a movement for rare disease awareness.
