Raising Awareness for Rare Diseases: Race for 7
Bengaluru, February 16, 2018: 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, today announced the 2018 edition of Race for 7. 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, the 25th of February.
Said PrasannaShirol, Founder Director, ORDI, and father of a rare disease patient,“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. Through this event, we aim to creategreater awareness about the many challenges faced by patients living with rarediseases and their caregivers. The larger public needs to know that the raredisease community is not as rare as the name suggests and that they need oursupport and encouragement.”
Noted Kannadafilm actor, Nataraj S Bhat, who was present at the announcement ofRace for 7, said, “This 7000 meter run/walk for rare diseases has a uniquestory per meter. Every step is a step to recognize the 7000 known rare diseasesand the patients who suffer from them. I Care for Rare and fully support ORDIto help bring a change the lives of rare disease patients so that they andtheir caregivers can have a more hopeful future.”
“We arepleased to be the title sponsor of Race for 7 for the third year running,”said Dr Chetan Desai, Chief Medical Officer, IQVIA India, anorganisation focused on using data and science to help healthcare clients findbetter solutions for their patients. “It is only through research that we canhelp find better diagnostic tools and treatment that will help rare diseasepatients and their caregivers lead a better quality of life. We hope that thelarger public will come forward in large numbers to participate in Race for 7and help amplify the voice of the rare disease community.” Rare Diseaseis an important focus area for IQVIA who has provided clinical services formore than 258 rare disease studies involving 22,570 patients in 87 countriesworldwide since 2011.
MrPrasanna Shirol ofORDI said that there is now a national policy for rare diseases that has beenannounced by the central government. It is very important that stategovernments follow suit and put in place regional policies on priority so thatthe benefits can be passed onto patients.
This year,Race for 7 will focus on government policies for rare disease patients. DrMeenakshi Bhat, Consultant in Clinical Genetics, Centre for HumanGeneticscommented, “In Karnataka, for many years now, the medical specialtyand patients with rare diseases have been working together to increaseawareness about their condition, provide supportive and definitive treatmentand encourage research into newer and cost-effective therapies where noneexist. These efforts both in the state and in other cities have resulted increating a national rare diseases policy and a draft of the state rare diseasespolicy. The aim of these policies is to reach out to maximum numbers ofindividuals with rare diseases countrywide and to improve all modalities oftreatment in an equitable manner. One of the main priorities is to have anOrphan Drug Policy approved by the government which will encourage a “Make inIndia” initiative for rare disease therapies.”
SagarBaheti, apatient with Stargardt's disease said, “Through Race for 7, ORDI is doing awonderful job of bringing together the rare diseases community and highlightingour cause and unique needs. I hope however the national and state authoritieswill also support us through policies that help us live lives of quality anddignity.”
Race for7 will beflagged off at 6:30 am on Sunday, February 25th at StJoseph’s Indian High School and the event is open to the public andpatients.