Stock Market Impact: No direct impact on equity markets, indices, or listed securities is mentioned in the release.
Listed Companies and Sectors: The announcement does not reference any listed company; it pertains to the healthcare/rare‑disease sector and a non‑profit foundation.
Investment Flows: No information on foreign direct investment (FDI), foreign portfolio investment (FPI), or other capital flow measures is provided.
Interest Rates, Inflation, and Liquidity: The release contains no discussion of monetary policy, interest‑rate changes, inflation control, or liquidity adjustments.
Fiscal or Monetary Policy: While the narrative urges the government to adopt a comprehensive National Rare Disease Policy, it does not detail any fiscal or monetary actions, tax changes, or budgetary allocations.
Detailed Event Information
Occasion: International MPS Awareness Day 2026.
Location: Sir Ganga Ram Hospital, New Delhi, India.
Book Title: “SHAURYA: A Father’s Promise”.
Author: Saurabh Singh, Co‑founder of the Rare Diseases India Foundation (RDIF).
Subject Matter: Chronicles the life of Shaurya Singh, who battled Mucopolysaccharidosis Type II (Hunter Syndrome) and passed away in 2025 at age 13; the narrative highlights the broader challenges faced by families affected by rare diseases.
Key Message: Calls for timely diagnosis, equitable access to treatment, dignified care, and the formulation of a National Rare Disease Policy.
Primary Launch Official: Harivansh, Deputy Chairman of the Rajya Sabha, who released the book on stage.
Remarks by Harivansh: Praised Saurabh Singh’s transition from a multinational corporate career to full‑time advocacy; emphasized that voices of MPS and other rare‑disease patients must reach the highest levels of governance; urged collective action for dignity, care, and hope.
Acknowledgement of RDIF Founder: Highlighted Singh’s personal loss and transformation of grief into a national mission for rare‑disease awareness.
Organisers: Rare Diseases India Foundation (RDIF) in association with Sir Ganga Ram Hospital.
Participating Medical Experts:
Dr. Ratna Dua Puri (Sir Ganga Ram Hospital)
Dr. Madhulika Kabra (Indian Council of Medical Research – ICMR)
Dr. Neerja Gupta (All India Institute of Medical Sciences – AIIMS, New Delhi)
Dr. Sunita Bijarnia (Sir Ganga Ram Hospital)
Dr. Veronica Arora (Sir Ganga Ram Hospital)
Dr. Swasti Pal (Sir Ganga Ram Hospital)
Hospital Leadership Present:
Dr. D. S. Rana, Chairman, Sir Ganga Ram Trust Society and Sir Ganga Ram Hospital
Dr. Ajay Swaroop, Chairman, Board of Management
Dr. Jaya Sood, Vice Chairperson, Board of Management
Dr. A. K. Bhalla, Honorary Secretary and Director, Sir Ganga Ram Hospital
Additional Attendees: Clinicians, researchers, patient‑advocates, policymakers, and families affected by rare diseases.
Visuals: Photograph of Harivansh releasing the book at the event (caption provided).
