The last day of February is observed each year globally as international rare disease day – a day to honor the estimated 350 Million patients suffering from and living with one of 7000+ rare diseases.
The number of patients in USA is ~30 Million, in EU its another ~30 Million, in India, its 70 Million and the list goes on. Some of these patients with lysosomal storage diseases, Muscular Dystrophies, ALS, retinopathies and various other idopathies represent the literally weakest strata of the society. About 80% of RDs are genetic in origin, many of them caused by mutations in a single gene. 50% of RDs are onset at birth and the rest are late onset. Millions die with such diseases each year globally.
There is a clear need for a national umbrella organization to represent the collective voice of all patients with rare diseases – for scattered voices die fast in most countries. Organization for Rare Diseases India (https://ordindia.in) was conceived to address exactly this unmet need. The collaborative Organization has engaged key opinion leaders in the field to publish the first research review article “Addressing the Challenges and Opportunities for the Indian Rare Diseases’ Community”.
ORDI has launched its annual rare disease awareness event “Racefor7” #ORDIRacefor7. https://www.
