More than 100 million patients with Rare Diseases are known in India.
The Indian Organization for Rare Diseases (I-ORD) was conceived in 2005 and is incorporated as a not-for-profit organization in India and USA.
It is the umbrella organization and represents interests of all rare diseases, individual patients, patient support groups, health policy advocates and health care provides for rare diseases.
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.
It is hard to find the information on rare diseases either for families or professionals. There is no awareness of rare diseases throughout the society. Un-education and poverty contribute further and makes health care out of bounds for the patients. Rare diseases are treated as social stigma by the society and invariably the burden falls on the mother more than father. The families affected by rare disease are isolated in their communities with little or no access to disease specific information.