- ORDI is an NGO committed to address the challenges faced by suffering from rare diseases and its treatment.
- The objective of the Race for 7 is to raise awareness for the 7,000 documented rare diseases and the estimated 70 million patients in India suffering from a rare disease.
Race for 7 was first held in India in 2016 on the last Sunday of February to commemorate World Rare Disease Day which falls on February 29th. This year, Race for 7 was simultaneously held in two countries and three cities, namely Bengaluru, Mumbai and Washington DC with a smaller event in Jaipur and South Carolina.
Speaking on the occasion, Sangeeta Barde, Co-founder ORDI said, “Race for 7 which is symbolic of 7,000 rare diseases is something which is close to our heart. Through Race for 7 we are able to spread the word about rare diseases which are very rare indeed. The next Race for 7 will be hosted on the last Sunday of February 2019.”
Amit Mookim, Managing Director IQVIA, said, “The event saw a good attendance of people at Mumbai and Bangalore. The world needs to support this cause more. There are 7,000 rare diseases and close to 70 million people across 150 countries who are affected by them. Each one of us needs to stand up and take more ownership of this cause and support more and more research along with treatment associated with rare diseases.”
What is Rare Disease Day?
Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with rare diseases and their families
The main objective of Rare Disease Day 2018 is to raise awareness with policy makers and the public, about rare diseases and of their impact on the lives of patients and to reinforce their importance as a public health priority.
Dr Chetan Desai, Chief Medical officer, India, Senior medical Director, Medical Ethics and Research IQVIA, said, “ORDI is committed to the cause of rare diseases and I think this is the noble cause that we have been associated with to create more awareness about rare diseases. We rarely talk about rare diseases unlike common diseases like hypertension and diabetes. We have events like Race for 7 every year across many cities, which will help us support the patients and their families.”
Several rare disease patients and their caregivers spoke on the occasion. They expressed gratitude for the increased awareness and access for rare disease patients made possible by events such as Race for 7, and also highlighted the need for continued awareness and education in this area.
The funds raised from Race for 7 will be utilised to help ORDI in its mission to improve health of patients with rare diseases across the country through awareness, advocacy, collaborations and information dissemination.
The run ended with post event entertainment, including dance performances.