Petition to Appeal to State and Union Health Ministers to Implementing Rare Disease Policy 

World-wide, over7,000 diseases are classified as rare based on their prevalence. The exact prevalence of these diseases in India is yet unknown but estimates suggest that over 7 crore Indians are affected by one of these rare/genetic diseases.While India is yet to adopt a standard definition for a rare disease, the Organization for rare diseases India (ORDI) has proposed diseases with incidences of 1 in 5000 people or more as rare diseases. 

Each year, 17 lakh new babies are born with a rare disease in India. There is no new born screening in India to detect the 56 known treatable rare diseases as is routinely performed in the United States and some other countries. The average time to diagnose a rare disease in USA and Europe is 5-7 years. Most children with rare disease do not live beyond the age of 5 due to late/no diagnosis, lack of availability or affordability of FDA approved therapies. A good number of patients’ death could be attributed to the prohibitive costs of treatments. Treatments for certain metabolic or Lysosomal storage disorders can cost exorbitant 3 lakh to 3 crore INR annually!

The Government provided healthcare has completely failed to provide the necessary health and financial support to patients with rare diseases in India. Patients with rare diseases are denied health insurance coverage in the name of pre-existing conditions exclusions. Rare diseases are a major cause for driving families to bankruptcy.

 To address this public health issue, ORDI petitions with each state and the central government of India, for the introduction of rare disease policies to provide proper and timely diagnosis, robust medical care, resources for advanced research, access and encouragement to pharma and biotech for production of drugs and devices related to rare diseases. Appropriate policies at the state and central government to address these issues will significantly improve the quality of life for 7 crore patients and families affected by rare diseases in India. ORDI believes that every person has the right to basic health and well-bring and that Government has a role to play in ensuring basic healthcare for all. Every patient with a rare disease has the right to equality, access and inclusion. We believe this policy is absolutely necessary and critical step in the right direction towards achieving national health equity for all Indians.

We call you for action by signing this petition and join us in advocating the cause of patients with rare diseases in India.

Prasanna Kumar Shirol

Co Founder - Organization for Rare Diseases India

Mobile No: +91 99801 33300

Email: prasanna@ordindia.org