Kolkata runs to support rare diseases kids

Usha Uthup, Anindya Chatterjee and Romi Datta join
Report by: 
EOI CORRESPONDENT
Kolkata
17 Feb 2019

‘Race For 7’, an initiative championed by the Organization for Rare Diseases India (ORDI), was organized in Kolkata today to raise awareness for rare disease patients, 50% of whom are children. Usha Uthup, Anindya Chatterjee and Romi Datta flagged-off the run and joined Kolkatans, who participated in the run and came to support rare disease patients. Race for 7, a first of its kind event for rare diseases in the world, symbolically represents 7000 rare diseases with 7000 people running for 7 kilometers to represent the average number of years it takes to diagnose a rare disease.
‘Race for 7’ is held in the month of February to commemorate World Rare Disease Day which falls on the last day of February. The theme for Rare Disease Day 2019 is ‘Bridging health and social care’, focusing on the need to better coordinate all aspects of care to improve the lives of people living with a rare disease. What started as an awareness walk to commemorate World Rare Disease Day in February 2016 has now grown into a significant campaign, conducted simultaneously in multiple cities and two countries – India and the USA.
Prasanna Shirol, Founder Director, ORDI, and father of a rare disease patient, says: “50% of all rare disease patients are children. This is a fact not many are aware of and supports our urgency of spreading awareness about rare diseases. Besides lack of access to early intervention and treatment because of the lack of widespread awareness about rare diseases the cost of treatment where available is often prohibitively expensive. Therefore, we urgently need national and state policies that address the unique requirements of the rare disease community and enable them to lead lives of dignity and self-worth. We also need institutions like corporates and schools and colleges to create a more inclusive environment for rare disease patients.”
“It’s an honour for me to be a part of ‘Race For 7’ today. There is an urgent need for all of us to be aware of the challenges rare disease patients face every day of their lives. What is heartbreaking is that most of these rare disease patients are children. I urge all to come forward in their support so that they can get access to early diagnosis and proper treatment,” said Usha Uthup.
“IQVIA is delighted to be associated for the fourth consecutive year as the main sponsor of Race for 7, an event that has been growing in stature and impact. While rare diseases, by virtue of their definition, affect relatively fewer numbers of patients, the overall number of rare disease patients is large enough to warrant more focused attention. We hope that the public will come forward in large numbers to participate in Race for 7 and help amplify the voice of the rare disease community. Race for 7 is a unique way of engaging the community with those who matter most –patients and their caregivers - for a common cause,” said Amit Mookim, Managing Director, IQVIA–South Asia. Rare Diseases is a key therapeutic focus for IQVIA who has provided clinical services for more than 258 rare disease studies in 87 countries worldwide since 2011.
Dr. Dipanjana Datta, PhD, Molecular genetics and a Genetic Counselor/ Co-coordinator, for ORDI, West Bengal commented “though a lot of good initiative and healthcare infrastructure is now available in other states for specialty and Rare Diseases, West Bengal is yet to catch up in terms of diagnostic facilities, genetic counseling, targeted management etc. Even locally, we need to build up specialty care centers now.   To attain a better future for rare Disease affected families, efforts should be also in developing technologies/ knowledge, which are already existing in the esteemed research Institutes in Kolkata, however, there is a delink between the requirement and research. We should have a platform where the scientists, clinicians and parent group should come forward to carry out such scientific projects and bring in the drugs/ therapy locally at reduced cost.”