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Email : contactus@ordindia.org

Rare Disease Facts

  • There are more than 7000+ Rare Diseases known/reported world-wide
    • The RARE GENES project maintains a comprehensive directory of all RDs
  • Over 350 Million people world-wide are affected ~30 Million in USA, ~30 Million in EU, ~70 Million in India
  • 1 in 20 Indians is affected by one of these RDs
  • About 80% of RDs are genetic in origin many of them being monogenic
  • 50% of RDs are onset at birth and the rest are late onset
  • RDs include inherited cancers, autoimmune disorders, congenital malformations, and infectious diseases amongst others include Hemangiomas, Hirschsprung disease, Gaucher disease, cystic fibrosis, muscular dystrophies and Lysosomal Storage Disorders.
  • USA is became the first country to enact Orphan Drug Act in 1983. The law is designed to facilitate the development and commercialization of drugs to treat
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    rare diseases, termed orphan drugs. The salient features of the act are as follows:

    • Incentives to Pharma companies investing in Orphan Drugs R&D
    • Faster/Priority clearance of Orphan Drugs Application through FDA
    • Market exclusivity for 7 years for Pharma companies to recover costs
  • Global Orphan Drugs market exceeded 50 Bil $ in 2011
  • Only ~500 approved orphan drugs exist in the market and over one hundred in clinical trials.
  • Majority of the diseases have no treatment and when they exist, are mostly unaffordable
  • Early diagnosis is a critical challenge in RD management (Avg time 5-7 yrs)
  • Affordability: Genzyme and more recently Shire have charitable access program for LSD patients in India

 

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