Authored by Saurabh Singh, Co-founder of the Rare Diseases India Foundation (RDIF), the book chronicles the journey of his son Shaurya and reflects the struggles, resilience, and aspirations of millions of families affected by rare diseases worldwide. Through the courageous battle of Shaurya against MPS II, also known as Hunter Syndrome, the book highlights the determination of families who continue to fight despite overwhelming challenges and calls for greater societal commitment to ensuring that no child is overlooked because of a rare medical condition.
At the core of the narrative is a father's promise to transform his son's courage into a lifelong mission dedicated to awareness, timely diagnosis, improved access to treatment, dignity, and hope for every child living with a rare disease. Although Shaurya passed away in 2025 at the age of 13, his legacy continues to inspire efforts aimed at ensuring that no child suffering from a rare disease is left behind.
The book extends beyond a personal account and seeks to sensitize policymakers, decision-makers, healthcare stakeholders, and society to the urgent need for a comprehensive and effective National Rare Disease Policy. It draws attention to the significant barriers faced by families in obtaining timely diagnosis, treatment, and support while advocating equitable healthcare access, stronger policy measures, and a more compassionate support system for rare disease communities.
Addressing the gathering, Harivansh acknowledged the extraordinary commitment of Saurabh Singh, noting that he left a promising career in a multinational corporation to dedicate his life to supporting rare disease patients and their families across India. He stated that Singh transformed his personal struggle into a national mission, turning grief into purpose and emerging as a powerful advocate for thousands affected by rare diseases.
Praising the work of the Rare Diseases India Foundation, Harivansh emphasized that Singh's compassion, perseverance, and dedication have played a significant role in bringing the concerns of the rare disease community to the forefront of public discourse and policymaking. He further stressed that the voices of patients suffering from MPS and other rare diseases must be heard at the highest levels of governance and that collective action is essential to ensure dignity, care, and hope for every affected family.
The event was organized by the Rare Diseases India Foundation in association with Sir Ganga Ram Hospital and brought together leading experts from the medical, scientific, and rare disease sectors. Among those who shared their insights on existing challenges, recent advancements, and future priorities in rare disease care were Dr. Ratna Dua Puri of Sir Ganga Ram Hospital, Dr. Madhulika Kabra of the Indian Council of Medical Research, Dr. Neerja Gupta of AIIMS New Delhi, Dr. Sunita Bijarnia, Dr. Veronica Arora, and Dr. Swasti Pal.
The programme was also attended by the leadership of Sir Ganga Ram Hospital, including Dr. D. S. Rana, Chairman of Sir Ganga Ram Trust Society and Sir Ganga Ram Hospital; Dr. Ajay Swaroop, Chairman of the Board of Management; Dr. Jaya Sood, Vice Chairperson of the Board of Management; and Dr. A. K. Bhalla, Honorary Secretary and Director of Sir Ganga Ram Hospital.
Eminent clinicians, researchers, patient advocates, policymakers, and rare disease families participated in the event, collectively reaffirming their commitment to improving the quality of life for individuals affected by rare diseases.
The launch of "SHAURYA: A Father's Promise" served as both a tribute to a young boy's extraordinary courage and a powerful call for stronger healthcare policies, greater public awareness, and sustained support for the rare disease community. The event underscored the urgent need for collaborative efforts to ensure that patients and families confronting rare diseases receive the recognition, care, and opportunities they deserve.
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