Mumbai: Organization for Rare Diseases India announces new edition of Race for 7
Event to raise awareness for 7,000 documented rare diseases is planned towards highlighting and addressing needs of community in country.
Mumbai: The Organization for Rare Diseases India (ORDI), a non-profit organization with a mission to highlight and address the needs of the rare disease community in India, on Thursday announced the 2018 edition of Race for 7.
This marks the first time that Race for 7 will be conducted in Mumbai.
Race for 7 is a 7000 meter walk/run to raise awareness for the 7000 documented rare diseases. What started as an awareness walk in 2016 to commemorate World Rare Disease Day in February has now grown into a significant campaign, conducted simultaneously in three cities and two countries - Bangalore, Mumbai and Washington DC. This year the walk will be conducted on Sunday, February 25.
Speaking about the event, Prasanna Shirol, Founder Director, ORDI, and father of a rare disease patient said, “It is estimated that 70 million patients in India suffer from a rare disease, an alarming statistic of 1 in every 20 Indians. These diseases are serious, often life-threatening, and approximately half of those affected are children. That is why Race for 7 is significant.”
He went on to add, “Through this event, we aim to create greater awareness about the many challenges faced by patients living with rare diseases and their caregivers. The larger public needs to know that the rare disease community is not as rare as the name suggests and that they need our support and encouragement.”
Speaking on the occasion, Sangeeta Barde, Co Founder ORDI said “It’s terrifying to think that you are alone in this fight of managing your rare disease and that you will probably not meet another patient like you.”
She added, “Through Race for 7 we hope to bring awareness for rare diseases and address some of the challenges faced by them. This is the first time we will host the event in Mumbai and we hope that Mumbaikars come out in force to champion this cause. “
Dr Chetan Desai, Chief Medical Officer, IQVIA India announced that they would be the title sponsor of Race for 7 for the third year running.
Prasanna Shirol of ORDI said that there is now a national policy for rare diseases that has been announced by the central government. It is very important that state governments follow suit and put in place regional policies on priority so that the benefits can be passed onto patients.
This year, Race for 7 will focus on government policies for rare disease patients.