ORDI Organizes Racefor7 to Raise Awareness and Advocacy for Rare Diseases
Chennai, February 27, 2020: The Organization for Rare Diseases India (ORDI), a not for profit organization committed to addressing the challenges of rare disease patients and their families, today announced the fifth edition of Racefor7, a multi-city run/walk to raise awareness for rare disease patients in India. Racefor7, symbolically representing 7000 rare diseases and the average of 7 years it takes to diagnose a rare disease, is a one of its kind event for rare diseases in the world with 7000 people running or walking 7 kilometers. The fifth edition will be on a much larger scale than before with events scheduled in 20 India cities. Racefor7 is held in February to commemorate World Rare Disease Day which falls on the last day of the month. This year’s rare disease theme is Reframe Rare for Rare Disease Day with the message that ‘Rare is many, rare is strong and rare is proud!’ The campaign message reframes perceptions of what it means to be ‘rare’ so that no one is left behind in achieving greater equity.
Facts about Rare Diseases
· 350 million patients globally of which 70 million rare disease patients are in India
· 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
· 30% of patients with rare diseases die before the age of 5 years
“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.
Dr Suresh, Director of Mediscan Systems and Manging Trustee of FCRFV says, "Fetal care Research Foundation & Mediscan have been working in the field of Rare Diseases for the past 2 decades over 350 children have been provided Rare disease occurs infrequently in the population, which can be anything from 1 in 5000 to 1 in 100000. It is our moral responsibility to support these patients by creating awareness and join them in advocacy and help them to improve quality of life by bringing experts together under one roof.
DR Sujatha Jagadeesh, Geneticist and metabolic disorder specialist Mediscan says, “Diagnosis of a metabolic disorder itself can take a long time and by then the patients would have gone through immense amount of suffering. Arriving at a precise diagnosis needs expertise and testing is expensive. After diagnosis, the children would need modification in diet, continuous monitoring and expensive treatments by a multidisciplinary team. For this it is important that the Government supports these Children. A PPP model would be ideal to share the expertise and mobilise funds for the same. The VHS- FCRF Centre of Excellence for Rare disorders set up at VHS is model of one point holistic care for the affected children supported by donors and similar centres can be replicated in other places.”
“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.
Besides Racefor7, ORDI also launched the first Rare Disease Helpline in India (+91 8892 555 000), Rare Disease Care Co-Ordination Centers (RDCCC), the first Center of Excellence for Rare Diseases (COERD) in India at Bengaluru, the first exclusive Day Care Center for Rare Diseases in India at Bengaluru, the campaign for a National Rare Disease Policy, the first NMD (Neuromuscular Clinic) in India for rare disease patients and India’s first assisted living facility for Rare Disease patients in Bengaluru, to name a few.
For registration, please visit: http://registration.racefor7.com/