Prasanna Kumar Shirol

Organization for Rare Diseases India

ORDI is a national umbrella organization set up as a section-25 non-profit company to represent the collective voice of rare disease patients in India. It works on public awareness, policy development, clinical trial facilitation and collaboration with advocacy groups and medical institutions.

Organization for Rare Diseases India reports the following, on its own site:

• 8,250 rare-disease patients associated
• 372 patients had treatment facilitated, worth Rs 284 crore
• 40,300 Race for 7 mass awareness participants
• 3,300 doctors supported ORDI events