About Indian Organisation for Rare Diseases
The Indian Organization for Rare Diseases was incorporated as a not-for-profit organization in USA & India. It is an umbrella organization and represents interests of all rare diseases, individual patients, patient support groups, health policy advocates & health care provides for rare diseases.
Mission: Awareness – Education & Research, Public Policy & Drug Development.
India does not have definition for rare diseases. Government of India has no public policy on Rare Diseases or on Orphan Drugs. It is further compounded by lack of trained doctors or diagnostic labs etc. There are no incentives to Indian pharma industry to develop Orphan Drugs.
We are celebrating the ‘International Rare Diseases Day’ for the first time under the aegis of IORD in India. We all have come together in solidarity with rare disease patients and create awareness among masses.
The intent of the press conference is to bring diverse issues into focus and improve the quality of life of all the RD patients in particular and awareness in the society at large. Medical professionals, patient advocacy groups, patient organizations from all over India have participated in the Press Conference and shared their views.
Our campaign targets primarily the general public and seeks to raise awareness amongst policy makers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.