The families also have to go through the pain, not like the patient, but a pain which is expressible to others.
Budithi Lakshmi Dedeepya who is suffering from Spinal Muscular Atrophy with her family. (Sumit Jha/South First)
Rare diseases, also known as orphan diseases, is a medical condition that impacts a small percentage of the population. They often have a genetic basis, stemming from mutations in the genes. Due to their infrequency, diagnosing rare diseases can be challenging, and they receive limited research attention, leading to restricted treatment options. The treatment costs are exorbitant as well.