Delhi High Court Intervenes to Revive Rare Disease Crowdfunding Platform

In a landmark move to address India’s rare disease treatment crisis, the Delhi High Court has ordered the formation of a four-member expert panel to oversee and revamp the national crowdfunding platform hosted by the Ministry of Health and Family Welfare. The platform, designed to support patients with life-threatening rare diseases, has so far failed to mobilize adequate public and corporate donations.

Judicial Trigger: A Mother's Plea for Life-Saving Treatment

The court’s intervention was prompted by a petition filed by the mother of an infant diagnosed with Spinal Muscular Atrophy (SMA)—a genetic neuromuscular disorder that causes progressive muscle wasting and respiratory failure. The child requires Zolgensma, a one-time gene therapy injection costing ₹17.5 crore, available only overseas. Despite being registered on the government’s crowdfunding portal, the family had received negligible financial support.

Justice Sachin Datta, presiding over the case, expressed concern over the platform’s underperformance. Of the 3,981 patients registered, only ₹3.91 lakh had been raised in total—highlighting a systemic failure in public outreach and donor engagement.

Understanding Rare Diseases and Their Costs

Rare diseases, also known as orphan diseases, affect a small percentage of the population but often require high-cost, precision therapies such as gene replacement, enzyme infusions, or biologics. These treatments are typically not covered under standard insurance or public health schemes due to their exorbitant costs and limited availability.

India’s National Policy for Rare Diseases (NPRD) 2021 aims to address this gap by enabling innovative funding mechanisms, including public donations and Corporate Social Responsibility (CSR) contributions.

Panel Composition and Mandate

The newly constituted committee includes:

• A Joint Secretary from the Department of Public Enterprises, Ministry of Finance
• Representatives from the Ministry of Health and Family Welfare
• Experts in CSR strategy and public health policy

The mandate:

• Boost CSR and public donations through strategic outreach
• Ensure transparency in fund allocation and patient prioritization
• Enhance platform credibility to attract sustained donor engagement

Crowdfunding Platform: How Donors Can Help

The official portal—https://rarediseases.nhp.gov.in—allows individuals and companies to:

• View verified patient profiles with medical documentation
• Donate securely via UPI, net banking, or card
• Receive tax benefits under Section 80G (subject to eligibility)
• Contribute under CSR mandates with official acknowledgment

Why This Matters

India faces a growing burden of rare diseases, with thousands of families unable to afford life-saving therapies. While government schemes offer partial support, crowdfunding can bridge the financial gap—but only if platforms are well-managed, transparent, and widely promoted.

The Delhi High Court’s directive is a critical step toward systemic reform, ensuring that India’s rare disease patients are not left behind due to funding failures.