On the occasion of International MPS Awareness Day 2026, Harivansh, Deputy Chairman of the Rajya Sabha, launched the book 'SHAURYA: A Father's Promise' at Sir Ganga Ram Hospital in New Delhi. The event was dedicated to raising awareness about Mucopolysaccharidosis (MPS) and rare diseases.
About the Book
Written by Saurabh Singh, Co-founder of the Rare Diseases India Foundation (RDIF), 'SHAURYA: A Father's Promise' tells the story of his son Shaurya. The book echoes the pain, courage, and hope of millions of rare disease families worldwide. Through Shaurya's courageous battle with MPS II (Hunter Syndrome), it gives voice to families who refuse to give up despite immense challenges. The book calls upon society to ensure that no child is forgotten simply because their disease is rare.
At its heart is a father's promise to transform his son's courage into a lifelong mission for awareness, timely diagnosis, access to treatment, dignity, and hope for every child living with a rare disease. Though Shaurya left this world in 2025 at the age of 13, his courage lives on as a beacon of hope, inspiring a movement to ensure that no child with a rare disease is left behind.
Policy Advocacy
Beyond a personal story, the book sensitizes policymakers, decision-makers, healthcare stakeholders, and society at large to the urgent need for a comprehensive and effective National Rare Disease Policy. This policy must address the needs of all rare disease patients. It highlights the challenges faced by families in accessing timely diagnosis, treatment, and support, while advocating for equitable healthcare, stronger policy interventions, and a more compassionate ecosystem for rare disease communities.
Event Highlights
Speaking on the occasion, Harivansh acknowledged the extraordinary dedication of Saurabh Singh, who left a promising career in a multinational company to devote his life to the cause of rare disease patients and their families across India. He remarked that Saurabh transformed his personal struggle into a national mission, turning pain into purpose and becoming a powerful voice for thousands affected by rare diseases.
Appreciating the impactful work of RDIF, Harivansh noted that Saurabh Singh's commitment, compassion, and perseverance have helped bring the concerns of the rare disease community to the forefront of public awareness and policymaking. He emphasized that the voices of MPS and other rare disease patients must be heard at the highest levels of governance and that collective efforts are needed to ensure dignity, care, and hope for every affected family.
Organizers and Participants
The event was organized by the Rare Diseases India Foundation (RDIF) in association with Sir Ganga Ram Hospital, New Delhi. It brought together leading voices from the medical, scientific, and rare disease communities, including Dr. Ratna Dua Puri of Sir Ganga Ram Hospital, Dr. Madhulika Kabra of ICMR, Dr. Neerja Gupta of AIIMS New Delhi, Dr. Sunita Bijarnia, Dr. Veronica Arora, and Dr. Swasti Pal. They shared valuable insights on the challenges, advancements, and future priorities in the field of rare diseases.
The occasion was also graced by the leadership of Sir Ganga Ram Hospital, including 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; and Dr. A. K. Bhalla, Honorary Secretary and Director, Sir Ganga Ram Hospital. They were joined by eminent clinicians, researchers, patient advocates, policymakers, and rare disease families, reaffirming a collective commitment to improving the lives of those affected by rare diseases.
