- To Raise Awareness on Rare Diseases in India
- Advocating Public Policy on Different Facets of Rare Diseases in India
- Encourage Pharma/Biotech Companies to Develop Orphan Drugs in India
About Us
Indian Organization for Rare Diseases (IORD)
Objectives:
Over the last 15 years, IORD conducted massive awareness among the stakeholders across India through various initiatives.
Our Efforts:
- National / Regional RD Awareness/ Conferences among masses bringing Patients, Patients’ Organizations, NGOs like Rotary, Civil Society and Policy Makers on one Platform.
- Awareness Rallies Through Marathon Runs etc.
- Paper Presentations across Academia & Journal Publications on the status of Rare Diseases in India.
- Showcasing advances in Development of Drugs for Orphan Diseases, Drug Discovery, Understanding R&D Process & Explaining Different Facets of Orphan Drugs in India to Medical Institutions.
- Reaching out to Undergraduate Medical Students Showcasing How Genetics Can Help find Solutions to Rare Diseases in India.
- Medical Fraternity and Scientific Community at large showcasing, Cutting Edge Technologies on Orphan Drug Research & Development in the World.
- Creating Opportunity Sessions for Pharma Industry on Orphan Drugs in India through Drug Repositioning & Indications Discovery, Research & Commercialization of Orphan Drugs through seminars themed on “Drugs for Rare Diseases – Government Initiatives & Global Opportunities”.
- Interactive Sessions with Political Establishment, Bureaucracy both at State and Central Governments in India that’s themed on “Policy Initiatives on Innovation of Orphan Drugs” to build consensus on Policy Advocacy for Orphan Drugs in India.
Results:
- Increased awareness among masses on Rare Diseases.
- Awareness among Medical Fraternity on dealing with RD Patients when presented to them.
- Stirred the Ministry of Health and Family Welfare, Government of India, into action when it came out with India’s official National Policy for Treatment of Rare Diseases in 2017. The 36-page document acknowledges Indian Organization for Rare Diseases (I-ORD) white paper A Journey Together: Rare Diseases and Orphan Products in India (2015 released) in its list of references (see 12th reference on page number 34)
- A policy shift in the Pharma Industry on Research & Development of Orphan Drugs in India backed by PHARMEXCIL – Pharmaceuticals Exports Promotion Council of India (set up by Ministry of Commerce & Industry, Government of India) in taking the lead to 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 in India from entities wherein they will collaborate with academic institutions, National R&D Laboratories in developing Orphan Drugs in India.
- Government of Andhra Pradesh & Telangana states mandating a pre-natal screening for RD in the State as few of the achievements.
On the Global Platform, IORD has been instrumental by being a:
- Founding Member of Rare Diseases International
- Member of the UN Body for Rare Diseases
- Board Membership at ICORD
- Regular collaborator with NORD, EURORDIS, CORD, NZORD and RV Australia etc on all RD matters.