Shri. Tejasvi Surya, Member of parliament; Dr. K. Sudhakar, Minister of Medical Education of Karnataka; Smt. Shwetha R Prasad, Actress and Mr. John Dodd, Senior Director- IQVIA flags off Racefor7
|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
Bangalore, February 23, 2020: Racefor7, an initiative championed by the Organization for Rare Diseases India (ORDI), was organized in Bangalore today to raise awareness for the rare disease community. Shri. Tejasvi Surya, Member of parliament, Dr. K. Sudhakar, Minister of Medical Education of Karnataka; Smt. Shwetha R Prasad, Actress and Mr. John Dodd, Senior Director- IQVIA flagged-off the run and joined hundreds of Bangaloreans, who participated in the run to show they Care for Rare. Racefor7, 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.
“They may be called rare but 70 million rare disease patients in India is not a number we can afford to ignore. We all need to work together to create a more inclusive society for the rare disease community. Racefor7 has my complete support as do all the patients and their families,” said [Shri. Tejasvi Surya, Member of parliament and Smt. Shwetha R Prasad, Actress and Mr. John Dodd, Senior Director- IQVIA] .
Although an estimated 1 in 20 Indians suffers from a rare disease, lack of awareness and information has created several challenges for patients and their caregivers, most importantly delayed diagnosis, affordable and targeted care and treatment and access. Besides members of the general public, several rare disease patients and their families participated in Racefor7 to draw attention to the challenges faced by rare disease patients, especially children, and the urgency for governments and other institutions to recognize their unique needs and create enabling policies and a more supportive environment for them.
Racefor7 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 2020 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. Racefor7, that started off as an awareness walk in Bangalore to commemorate World Rare Disease Day in February 2016, has now grown into a significant campaign that this year will be held across 20 Indian cities.
Prasanna Shirol, Founder Director, ORDI, and father of a rare disease patient, said, “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 so that early diagnosis and treatment can increase their life expectancy and quality of life. 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. We also need a supportive rare disease policy and institutions like corporates and schools and colleges to create a more inclusive environment for rare disease patients.”
“IQVIA is delighted to be associated for the fifth consecutive year as the main sponsor of Racefor7. Racefor7 is a unique way of engaging the community with those who matter most –patients and their caregivers – for a common cause. It is imperative that the society and government understand and address the needs of these rare disease patients. We hope that the public will come forward in large numbers to participate in Racefor7 and help amplify the voice of the rare disease community,” 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 Meenakshi Bhat – Consultant – Clinical Genetics – Centre for Human Genetics in Bengaluru, “As a medical specialist, I come across many families who have waited months to years for a correct diagnosis and to know what to do next. In India, awareness about rare diseases is low not only in the general public but also among doctors. This is because genetics is a very small part of the MBBS curriculum in most medical colleges. Awareness has to increase because early diagnosis helps in treating the patient early to avoid disability. In some conditions where specific treatment is available, the best results are achieved if they begin early, especially to avoid brain damage. This endeavor is aimed at sensitizing the public about rare diseases and also to highlight some of the difficulties that families face on a daily basis.”
Prasanna added the importance of having a rare disease policy and an Orphan drug Policy for holistic management of Rare Diseases for patients, in the absence of any health care policy /insurance coverage and to support the Industry to develop newer drugs and research respectively.
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.
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.
Mr. Prasanna Shirol
Co-founder and Executive Director, ORDI
Mr. Sudhakaran S