In India, patient organisations first became involved in Rare Disease Day in 2010. Since then, they’ve focused on raising awareness and compassion for people living with a rare disease all across India through poster campaigns, school visits, competitions, a film festival, counselling sessions, and more. In 2012, the day attracted mass media attention when Indian star singer Shaan performed at an event.

India marked the occasion of Rare Disease Day 2020 with events across the country including India’s annual ‘Race for 7’ event. More than 7000 participants ran a 7km race to represent the more than 7000 rare diseases documented so far. The Indian Organisation for Rare Diseases also hosted a meeting bringing together all stakeholders, creating a platform to brainstorm and analyse the latest rare disease policy released by the Indian health ministry. 

Do you know of any events not listed here? Or would you like to get involved? Email us at [email protected].