- 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
Rare Disease Facts
Our Executive Director Mr. Prasanna Shirol was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.
