National Hunter Alliance Summit 2025 Highlights Urgent Gaps in Rare Disease Policy and Patient Care

NewsVoir
New Delhi [India], September 29: The National Hunter Alliance Summit 2025, held on 27th September'2025 in New Delhi, brought together patients, caregivers, medical experts, policymakers, and advocates to address the urgent and ongoing challenges faced by individuals affected by Hunter Syndrome (MPS II) and other Rare Diseases.
The program began with an emotional tribute to the Hunter Syndrome warriors who lost their lives to this devastating disease. Their memory served as a reminder of the pressing need for action and accountability in India's rare disease ecosystem.
Prof. (Dr.) Shefali Gulati, at AIIMS, New Delhi also member of the Central Technical Committee for Rare Diseases (CTCRD), emphasized the need for a coordinated, collaborative approach among stakeholders and unified advocacy to enhance rare disease management, policy execution, and patient care.
Mr. Saurabh Singh, Co-founder & Director of Rare Diseases India Foundation (RDIF), delivered a strong presentation on the systemic gaps in the implementation of the National Rare Disease Policy 2021 (NRDP). While Hunter Syndrome is already recognized under the policy, he highlighted that:
- The Rs. 50 lakh financial assistance under NRDP remains inaccessible and ineffective, as treatment costs run into crores.
- Patients are denied support even in emergencies at private hospitals.
- Ayushman Bharat Yojna benefits are restricted only to BPL families, excluding a large patient population.
- No caregiver support is available, despite families bearing heavy monthly expenses and emotional burdens,
- No Insurance companies cover Rare Diseases.
- No meaningful research is being conducted in India to reduce the cost of life-saving therapies.
- Judicial delays further deny children their fundamental right to life under Article 21 of the Constitution.
He also drew attention to serious issues faced by dependents of Defence personnel and CGHS beneficiaries, where bureaucratic delays in drug procurement cause treatment gaps of 3-6 months, severely impacting patient health. Despite funding releases, lethargy in the system continues to risk lives.
Comparing the rapid development of the COVID-19 vaccine to a decade of inaction on rare diseases, he stressed: "If India could research and deliver a COVID vaccine in months, why has no progress been made in rare diseases over the last 12 years?"
In a deeply moving moment, Mr. Saurabh Singh shared his personal loss--just last month, on 20th August 2025, he lost his 13 years old beloved son Shaurya to Hunter Syndrome. Yet, standing firm only weeks later, he declared: "My fight will continue until medicines become affordable or free for every rare disease patient in this country. My continued work for this cause will be my eternal tribute to Shaurya." His courage and determination drew heartfelt admiration from all present, symbolizing the unconditional love of a parent and the collective pain of hundreds of families fighting similar battles.
The summit also heard an emotional account from Ex-Serviceman HAV. D.K. Chansolia, who shared the struggles of procuring life-saving drugs for his son within the Defence system. He highlighted that challenges such as procedural delays and shortage of specialized experts often cause treatment gaps. 'As someone who served the nation, I had faith that my family's healthcare needs would be supported. Today, I feel disheartened,' he shared.
The summit ended with a united appeal to the Government and Hon'ble Supreme Court to urgently address these gaps and save the lives of rare disease patients.
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