~A 7000 meter walk for 7000 rare diseases~
~ Rare disease policies for rare disease patients ~
Bengaluru 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, has 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 Prasanna Shirol, 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 whyRace for 7 is significant. 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.”
Noted Kannada film actor, Nataraj S Bhat, who was present at the announcement of Race for 7, said, “This 7000 meter run/walk for rare diseases has a unique story per meter. Every step is a step to recognize the 7000 known rare diseases and the patients who suffer from them. I Care for Rare and fully support ORDI to help bring a change the lives of rare disease patients so that they and their caregivers can have a more hopeful future.”
“We are pleased to be the title sponsor of Race for 7 for the third year running,” said Dr Chetan Desai, Chief Medical Officer, IQVIA India, an organisation focused on using data and science to help healthcare clients find better solutions for their patients. “It is only through research that we can help find better diagnostic tools and treatment that will help rare disease patients and their caregivers lead a better quality of life. We hope that the larger public will come forward in large numbers to participate in Race for 7 and help amplify the voice of the rare disease community.” Rare Disease is an important focus area for IQVIA who has provided clinical services for more than 258 rare disease studies involving 22,570 patients in 87 countries worldwide since 2011.
Mr 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. Dr Meenakshi Bhat, Consultant in Clinical Genetics, Centre for Human Geneticscommented, “In Karnataka, for many years now, the medical specialty and patients with rare diseases have been working together to increase awareness about their condition, provide supportive and definitive treatment and encourage research into newer and cost-effective therapies where none exist. These efforts both in the state and in other cities have resulted in creating a national rare diseases policy and a draft of the state rare diseases policy. The aim of these policies is to reach out to maximum numbers of individuals with rare diseases countrywide and to improve all modalities of treatment in an equitable manner. One of the main priorities is to have an Orphan Drug Policy approved by the government which will encourage a “Make in India” initiative for rare disease therapies.”
Sagar Baheti, a patient with Stargardt’s disease said, “Through Race for 7, ORDI is doing a wonderful job of bringing together the rare diseases community and highlighting our cause and unique needs. I hope however the national and state authorities will also support us through policies that help us live lives of quality and dignity.”
Race for 7 will be flagged off at 6:30 am on Sunday, February 25th at St Joseph’s Indian High School and the event is open to the public and patients.
For registration, please visit: http://registration.ra cefor7.com/
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.
For more information, please visit www.ordindia.org or cont actus@ordindia.org
Prasanna Kumar B Shirol, Founder Member – ORDI, +91 9980133300, Prasanna@ordinidia .org
Anita Dawson, 9341394633 , anita@actimediaindia.com
