Thousands race to raise awareness about rare diseases

Over 3500 people including 40 rare disease patients and their caregivers, took part in the Race for 7 in Bengaluru on Sunday.

The 7,000-metre run/walk to raise awareness about 7,000 documented rare diseases, witnessed around 1500 participants from Mumbai. It is estimated that 70 million patients in India suffer from rare diseases.

“Given the high prevalence of rare diseases, the term rare is misleading and we should perhaps find another name for it,” said Dr Jagdish Mittur, head of Biotechnology Facilitation Cell at Karnataka Biotechnology and Information Technology Services.

Toushif, diagnosed with pachydermoperiostosis said that the challenges faced by those who live with rare diseases are many.

The event was organised by Organization for Rare Diseases India (ORDI). It was flagged off by Kannada actors Shwetha R Prasad and Natraj S Bhat at the St Josephs Indian High School. A Boston Marathon runner and Paralympic champions who suffer from one or another kind of rare disease participated in the event.

Over 3500 people including 40 rare disease patients and their caregivers, took part in the ‘Race for 7’ in Bengaluru on Sunday.

The 7,000-metre run/walk to raise awareness about 7,000 documented rare diseases, witnessed around 1500 participants from Mumbai. It is estimated that 70 million patients in India suffer from rare diseases.

“Given the high prevalence of rare diseases, the term ‘rare’ is misleading and we should perhaps find another name for it,” said Dr Jagdish Mittur, head of Biotechnology Facilitation Cell at Karnataka Biotechnology and Information Technology Services.

Toushif, diagnosed with pachydermoperiostosis said that the challenges faced by those who live with rare diseases are many.

The event was organised by Organization for Rare Diseases India (ORDI). It was flagged off by Kannada actors Shwetha R Prasad and Natraj S Bhat at the St Joseph’s Indian High School. A Boston Marathon runner and Paralympic champions who suffer from one or another kind of rare disease participated in the event.

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