India has the world’s third highest rare disease population, more than the whole population of Thailand
There are an estimated 7000 known rare diseases. Only 450 are recorded in India
Average of 7 years to diagnose a rare disease
Less than 5% of rare disease have available treatment, most unaffordable
72% of rare diseases have identifiable genetic origin
70% of rare diseases affect start in childhood
“This year’s Racefor7 comes soon after the release of the National Policy for Rare 2020 draft by the Government of India which the rare disease community has found wanting in several areas,” said Prasanna Shirol, Ashoka Fellow and Co-founder, ORDI, and the father of a rare disease patient. “We hope that this event will create an opportunity for more voices of the rare disease community to be heard across all stakeholders so that the rare disease community can lead a life of dignity and equality. We need to increase our efforts to show that ‘rare isn’t scarce, rare isn’t infrequent, rare isn’t remote’ and the idea of holding Racefor7 in more cities this year is to show policy makers that rare is not as rare as it is made out to be.” Collectively across the world, rare disease patients make up the third largest country in the world and in India, the rare disease community is about the size of Thailand’s population.
It was in February, 2016, that ORDI organized the first Racefor7 in Bangalore to create awareness and a collective voice for the rare disease community. Since then, the event has grown in size and stature and is held in many cities across India and in select overseas countries. In 2020, Racefor7 will be held through February and March across 20 Indian cities – Ahmedabad, Bengaluru, Chennai, Coimbatore, Davanagere, Delhi, Hyderabad, Indore, Jaipur, Kochi, Kolkata, Mangaluru, Mumbai, Mysuru, Nagpur, Puducherry, Pune, Thiruvananthapuram Vadodara and Vellore. Although an estimated 70 million patients in India live with a rare disease, accessible and affordable treatment is still a long way away. Besides the fact that it takes an average of seven years to diagnose a rare disease due to lack of awareness and diagnostics available, most treatment when available is either not accessible in India or beyond the reach of an average Indian patient. Patients and their caregivers therefore go through a very challenging time, compounded by the lack of other facilities and public access for such patients who often suffer from related physical disabilities. Besides members of the general public, several rare disease patients and their families will participate in Racefor7 to draw attention to the challenges they face and the need for government support in creating a comprehensive Rare Diseases Policy for India as well as the need of other stakeholders to create to more supportive and inclusive environment for the rare disease community.
“IQVIA is delighted to be associated for the fifth consecutive year as the main sponsor of Racefor7 which is a unique way of bringing together rare disease patients, their caregivers and the community at large for a common cause. It is extremely rewarding to learn of the positive impact that Racefor7 has had for the rare disease community over the last five years,” 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 321 rare disease studies in 87 countries worldwide since 2014.
“ There has been some extremely positive changes in the state post the first Race for 7 awareness in 2019. The State government has taken initiative and established a task force committee for Rare Disease, many eminent doctors have taken lead in spreading disease specific awareness, many parent bodies have come together as a group to join hands in the endeavor “ said Dr. Dipanjana Datta, state coordinator, ORDI. She added that there has been a lot of activity in awareness, management and in coming up with intervention strategies towards rare disease post the first Race for 7, however , it’s a long way to go in sensitizing not only policy makers, and health care givers, but also the general public towards rare disease and the struggles for each such family to build an inclusive society. “We have seen the positive impact of Race for 7 through these years in raising awareness about rare diseases but more needs to be done. I request all member of the public to participate in Racefor7 because together we can amplify the voice of the rare disease community and move mountains,” said Prasanna Shirol.
