MUMBAI, (GNI): 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 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 held simultaneously 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, is symbolic of the 7000 documented rare diseases and is representative of
the estimated 70 million patients in India suffering from a rare disease. An
alarming statistic of 1 in every 20 Indians. Through Race for 7 we hope to
spread awareness about rare diseases. The response to this first Race for 7
in Mumbai shows us that Mumbai cares for rare.”
Amit Mookim General Manager, India and South Asia, IQVIA, said, “Race for
7 has proven to be an important event to spread awareness on rare diseases.
Each of us needs to stand up and take more ownership of this cause and
support research, along with treatment, for rare diseases.”
Several rare disease patients and their caregivers spoke on the occasion
and, while expressing gratitude for the increased awareness and access for
rare disease patients made possible by events such as Race for 7, also
highlighted the need for continued awareness and education in the area.
ORDI was founded to address the many challenges in the management of rare
disease in India. It aims to address the unmet needs of rare disease
patients and serves as an umbrella organization for rare disease patients
and other stakeholders throughout the country. The funds raised from Race
for 7 will be utilized 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, stated in the press release.
About Organization of Rare Diseases India (ORDI): Founded in Feb 2014, ORDI is a patient centered non-profit organization with the mission to improve health of patients with rare diseases across India through awareness, advocacy, collaborations and information dissemination. ORDI represents the collective voice of all patients with rare diseases in India to effect government policy making. ORDI has identified and taken on the grand challenges facing the rare diseases
community in India and is committed to systematically and holistically
addressing those challenges.