The Indian Organization for Rare Diseases (IORD) was conceived in 2005 and is incorporated as a not-for-profit organization in both India and USA. We are an umbrella organization and represent interests of all stakeholders of rare diseases in India including individual patients, patients’ support groups, health policy advocates and health care providers.

For more than a decade after IORD came onto the scene, India neither had an official definition for rare diseases nor public policy on Rare Diseases or Orphan Drugs in India.

Worse, lack of trained doctors and diagnostic facilities compounded the woes when it came to rare diseases in India. There are no incentives to Indian pharma industry to develop Orphan Drugs in India either.

This is not all as desperate families of RD patients often go from pillar to post to track down the information they need. The problem increases manifold for those whose diagnosis is not yet confirmed as it’s known to take 4.8 years for a patient from the stage of symptom manifestation to a proper diagnosis.

What aggravates the problem of rare diseases in India for families, healthcare workers and professionals is poor awareness of rare diseases throughout the society. Uneducation and poverty contribute further, taking healthcare out of bounds for the patients.

Often, rare diseases are treated as a social stigma by the society and invariably the burden falls on the mother more than the father. The families affected by rare disease get isolated in their communities with little or no access to disease-specific information.

With your support, we at IORD aim to fill this gap.