RACE FOR 7: MUMBAI WALKS FOR RARE DISEASES

Mumbai, February, 2018: Lending their collective voice to the rare disease community in India, an enthusiastic 1500+ participants, including rare disease patients and their caregivers, took part in Race for 7 in Mumbai and were joined by another 3500+ in Bangalore. Race for 7 is an awareness walk/run organized by the Organization for Rare Diseases (ORDI), an NGO committed to addressing the challenges faced by those living with rare diseases. The objective of Race for 7 is to raise awareness for the 7000 documented rare diseases and the estimated 70 million patients in India suffering from a rare disease. The event was flagged off by Sangeeta Barde, Co-Founder, ORDI and Amit Mookim, Managing Director IQVIA.

Race for 7was first held in India in 2016 on the last Sunday of February to commemorateWorld Rare Disease Day which falls on February 29th.  Thisyear, Race for 7 was held simultaneously in two countries and threecities, namely Bengaluru, Mumbai and Washington DC with a smaller event inJaipur and South Carolina.

Speakingon the occasion, Sangeeta Barde, Co-founder ORDI said, “Race for 7, is symbolic of the7000 documented rare diseases and is representative of the estimated 70 millionpatients in India suffering from a rare disease. An alarming statistic of 1 inevery 20 Indians. Through Race for 7 we hope to spread awareness about rarediseases. The response to this first Race for 7 in Mumbai shows us that Mumbaicares for rare.”

AmitMookim General Manager, India and South Asia, IQVIA, said,  “Race for 7has proven to be an important event to spread awareness onrare diseases. Each of us needs to stand up and take moreownership of this cause and support research, along with treatment,for rare diseases.”

Several raredisease patients and their caregivers spoke on the occasion and, whileexpressing gratitude for the increased awareness and access for rare diseasepatients made possible by events such as Race for 7, also highlighted the needfor continued awareness and education in the area.

ORDI wasfounded to address the many challenges in the management of rare disease inIndia. It aims to address the unmet needs of rare disease patients and servesas an umbrella organization for rare disease patients and other stakeholdersthroughout the country. The funds raised from Race for 7 will be utilized tohelp ORDI in its mission to improve health of patients with rare diseasesacross the country through awareness, advocacy, collaborations and informationdissemination.

The runended with post event entertainment, including dance performances.


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