Mr. Prasanna Shirol is the Co-founder & Director of ORDI (Organisation for Rare Diseases in India) and a prominent advocate for rare disorders with over 11 years of national-level experience. He serves as a Member (Lay Person) on the Central Ethics Committee on Human Research at ICMR, New Delhi, and is a key figure in several advisory councils, including the Global Patient Advisory Council for Rare Diseases and Parexel’s Patient Advisory Council for India. His contributions have earned him accolades like the Rare Champion of Hope Award (2019) from Global Gene. A pioneer in rare disease awareness, Mr. Shirol co-founded the first national support group for ultra-rare diseases (LSDSS India) and initiated India’s national observance of International Rare Disease Day in 2010. He also launched the Pompe Foundation in India to empower patients and families affected by Pompe disease. Under his leadership, ORDI established India’s first nationwide Rare Disease Helpline (+91 8892 555 000) and the Rare Disease Care Coordination Centre in Bangalore, connecting patients with healthcare providers, diagnostic centres, and treatment options.

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World Rare Disease Day: Key Challenges & Developments decoded with Prasanna Shirol, ORDI & Dr Neerja Gupta, AIIMS

Dr. Nandita Mohan28 Feb 2025 11:30 AM IST

Rare diseases may be uncommon, but their impact on individuals, families, and communities is profound. Since 2008, Rare Disease Day has been observed...