Racefor7: Rare disease patients, caregivers to hold multi-city march

Besides, most treatments, even when available, is either not accessible in India or beyond the reach of an average Indian patient, claimed health care experts here.

Patients and caregivers go through a very challenging time coupled with the lack of public access to patients who suffer from physical disabilities. Racefor7, symbolically representing 7,000 rare diseases and the average of seven years it takes to diagnose a rare disease, is first of its kind event for rare diseases in the world with 7,000 people running/walking seven kilometres on February 29, marking World Rare Disease Day.

The run aims to draw attention towards the need for government support in creating a comprehensive Rare Diseases Policy for India as well as the need of other stakeholders to create to a more supportive and inclusive environment for the rare disease community.

Dr Sujatha Jagadeesh, Geneticist and Metabolic Disorder specialist, Mediscan said, “Diagnosis of a metabolic disorder itself can take a long time and by then the patients would have gone through an immense amount of suffering. Arriving at a precise diagnosis needs expertise and testing is expensive. After diagnosis, children would need modification in diet, continuous monitoring and expensive treatments by a multidisciplinary team. For this, the Government must support these Children. A public-private partnership model would be ideal to share the expertise and mobilize fundsfor the same.”