Face2News/Chandigarh

February is Rare Disease Month and efforts are being made to mobilize people and raise awareness about rare diseases. Most of these diseases are genetic disorders, and some run in families. Patients often visit multiple doctors, and diagnosis is frequently delayed.

The Genetic Metabolic Unit of the Department of Pediatrics at PGIMER organized a walk in association with the Organization for Rare Diseases India (ORDI) on Sunday morning. The walk took place from Bhargava Auditorium to Sukhna Lake, with participants including students from Panjab University, NINE, and DAV College, as well as doctors and caretakers of rare disease patients.

Prof. Ratho from PGIMER flagged off the walk from the auditorium, and Prof. Bhavneet Bharti gave a short speech at Sukhna Lake before distributing medals to some participants. Caretakers of two patients also shared their experiences and the challenges they face while caring for a child with a rare disease.

Raising awareness can lead to a higher index of suspicion, early referrals, and better diagnoses for disorders such as lysosomal storage diseases like Gaucher disease, cystic fibrosis, certain inherited immune disorders, and syndromes affecting multiple organs like the heart, skin, and kidneys.