A virtual event in namma Bengaluru to raise awareness and destigmatise rare diseases in India
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A virtual event in namma Bengaluru to raise awareness and destigmatise rare diseases in India
In the backdrop of Rare Disease Day 2021, Organisation for Rare Diseases India (ORDI) a not for profit organization representing the collective voice of all rare disease patients in India, is conducting the sixth edition of Racefor7. It is a unique run/walk/bicycle ride with 7000 people running or walking 7 kilometres to raise awareness about rare diseases. This year the event is being held virtually across the country united by a live broadcast from Bangalore at 6.30 am IST. Racefor7 symbolises the 7000 rare diseases, the average of 7 years it takes to diagnose a rare disease and the estimated 70 million rare disease patients in India
This year, the event aims at virtually uniting people from across the country to address the needs of the rare disease community and enable them to lead lives of dignity. With a proud message of Rare is many, rare is strong and rare is proud, the event will seek to promote access, inclusivity, and de- stigmatization around rare diseases. The pandemic has been particularly hard on rare disease patients who have faced increased challenges of access to ongoing treatment and emotional stress and trauma caused by lack of access and the pandemic itself.
Prasanna Shirol, Founder Director, ORDI, “We have seen the positive impact of Racefor7 through these years in raising awareness about rare diseases but more needs to be done. We need to increase our efforts to show “Rare is Many. Rare is Strong. Rare is Proud”. I request all members of the public to support and participate in Racefor7 2021”