United Front: Addressing India's Rare Disease Challenges

The National Hunter Alliance Summit 2025 in New Delhi brought stakeholders together to address the challenges of Hunter Syndrome and other rare diseases. Key issues included funding gaps, inaccessible treatments, and inadequate policy execution. Personal accounts highlighted the emotional and systemic hurdles families face while advocating for change.

The National Hunter Alliance Summit 2025 convened experts, patients, and advocates in New Delhi to confront the ongoing challenges of Hunter Syndrome and rare diseases. The gathering began with a tribute to those lost to these conditions, underscoring the urgent need for action in India's rare disease ecosystem.

Prof. (Dr.) Shefali Gulati of AIIMS emphasized a collaborative approach among stakeholders to improve disease management and policy execution. Mr. Saurabh Singh from the Rare Diseases India Foundation spotlighted systemic flaws in the National Rare Disease Policy 2021, highlighting financial aid inaccessibility and lack of insurance coverage. He shared the poignant story of losing his son, Shaurya, to Hunter Syndrome, vowing to continue fighting for affordable treatments.

Ex-Serviceman HAV. D.K. Chansolia shared his frustrations over bureaucracy and healthcare challenges. The summit concluded with calls to the Government and Supreme Court to urgently address policy gaps to save rare disease patients' lives.

(With inputs from agencies.)