Scores of people, including children and wheelchair users, took park in a one-of-its-kind race to create awareness about rare diseases.
‘Racefor7’ was flagged off by Johny Tom Varghese, director for the Welfare of the Differently Abled, and S. Suresh, founder and managing trustee of Fetal Care Research Foundation.
The participants ran 7 km, representing the 7,000 rare diseases.
February 28 is observed as World Rare Disease Day. The theme for Rare Disease Day this year is ‘Reframe Rare for Rare Disease Day’. The message was ‘Rare is many, rare is strong and rare is proud!’
Racefor7 began as an awareness walk in Bengaluru in February 2016, and has grown into a campaign held across 20 cities in the country.
Need for policy
According to Prasanna Shirol, founder-director of Organisation for Rare Diseases India (ORDI) and father of a rare-disease patient, 50% of all rare disease patients are children. “We also need a supportive rare disease policy and institutions like corporates, schools and colleges to create a more inclusive environment for rare disease patients.”
Dr. Suresh said that FCRF and Mediscan were working in the field of rare diseases for the past two decades and over 350 children had been provided treatment.
ORDI also launched a helpline for rare diseases (+91 8892 555 000) on the occasion.
