Rare disease crowdfunding platform oversight in Delhi

Rare disease crowdfunding platform oversight in Delhi

The Delhi High Court has set up an expert committee to supervise the crowdfunding platform meant for rare diseases in India, after scrutiny of its poor performance. One case involves an infant with Spinal Muscular Atrophy Type 1 whose treatment costs ~?17.5 crore per unit.

 Rare diseases pose huge financial burdens and raise questions about equitable access to high-cost therapies.

 Increased regulatory oversight & leveraging CSR (corporate social responsibility) funds are being encouraged to fill gaps.