• Raising the Awareness of Rare Diseases
  • Advocating Public Policy
  • Encouraging Pharma/biotech to Develop Orphan Drugs

Over the last 15 years, I-ORD conducted massive awareness among the stakeholders across India through:

  • National / Regional RD Awareness Conferences among masses bringing Patients, Patient Organizations, NGOs like Rotary, Civil Society and Policy Makers on one Platform. Awareness by being part of Marathon Runs etc
  • Paper Presentations across Academia on Rare Diseases with specific focus
  • To Medical Institutions showcasing advances in Development of Drugs for Orphan Diseases, Drug Discovery – Understanding R&D Process
  • To Undergraduate Medical Students showcasing themes like – Genetics helping find solutions to Rare Diseases
  • Medical Fraternity and Scientific Community at large showcasing, Cutting edge technologies on Orphan Drug Research & Development
  • Opportunity Sessions for Pharma Industry on Orphan Drugs through Drug Repositioning & Indications Discovery, Research & Commercialization of Orphan Drugs and through seminars themed ‘Drugs for Rare Diseases – Government Initiatives & Global Opportunities’
  • Interaction with Political Establishment, Bureaucracy both at State and Central Governments in India with seminars themed ‘Policy Initiatives on Innovation of Orphan Drugs’ and build consensus on Policy Advocacy for Orphan Drugs

This resulted into:

  • Awareness among masses on Rare Diseases
  • Awareness among Medical Fraternity on dealing with RD Patients when presented to them.
  • A policy shift in the Pharma Industry on Research & Development of Orphan Drugs being backed by PHARMEXCIL – Pharmaceuticals Exports Promotion Council of India (setup by Ministry of Commerce & Industry, Government of India) in taking the lead and build a draft policy document on Orphan Drugs for Government of India
  • Government of India through its Science & Engineering Research Board has called for R&D Proposals on Orphan Diseases / Neglected Diseases from entities wherein they will collaborate with academic institutions, National R&D Laboratories in developing Orphan Drugs. Government of Andhra Pradesh mandating a pre-natal screening for RD in the State as few of the achievements.

On the Global Platform, I-ORD been instrumental by being a:

  • Founding Member of Rare Diseases International
  • Member of the UN Body for Rare Diseases.
  • Board Membership at ICORD. (can be elaborated)
  • Collaborate regularly with NORD, EURORDIS, CORD, NZORD and RV Australia etc. on all RD matters.