Thousands Care for Rare Event Held to Commemorate Rare Disease Day
Bengaluru, February 26, 2017: In an act of solidarity, around 3500 citizens of Bengaluru turned up in large numbers to take part in Race For 7, an awareness walk /run organized by the Organization for Rare Diseases India (ORDI), a non-profit organization committed to addressing the challenges of the rare disease community in the country. The event also saw enthusiastic participation by many patients living with rare diseases alongside noted personalities such as para shuttler world champion Anand Kumar and yoga therapist Vishwabandhu Nagesh. The morning walk through Cubbon Park had caregivers, patients and other citizens exchanging notes and sharing information on the challenges and triumphs faced by those afflicted with rare diseases.
“I am really touched to see so many citizens come out to participate in Race for 7 and support the cause of rare disease patients. I had one family earlier, but now I have many,” said Prasanna Kumar B Shirol, Founder Director, ORDI and the father of Nidhi Shirol diagnosed with Pompe Disease which is a rare disease. “It means a lot to those who live with various rare diseases and their families to have your support. Hopefully we will be able to bring about a greater level of awareness and changes in policy that will in turn result in a better understanding and timely treatment for the many rare diseases that exist.”
The 7000 meter run/walk which symbolically represents the 7000 documented rare diseases was held to commemorate Rare Disease Day which falls at the end of February. The theme for this year’s Rare Disease Day is Research with the slogan With Research Possibilities are Endless to highlight the importance of research into rare diseases. This year also saw Race For 7 being conducted on a smaller scale in Washington, USA.
“We are committed to working with ORDI to create greater awareness about rare diseases in India. Given the large number of known rare diseases, we need more efforts in early diagnosis and treatment to help rare disease patients and their families lead a better quality of life,” said Naz Haji, Managing Director, India R&D Solutions, QuintilesIMS, an organization that has been associated with more than 245 rare disease studies in 96 countries since 2011. “A greater focus on research and better understanding of rare diseases will also help in prevention as well as early access to treatment for patients.”
Post the event, participants were treated to an entertainment programme by rare disease patients and employees of QuintilesIMS. “I have two key messages for all of you,” said Amit Mookim, General Manager, South Asia QuintilesIMS. “Take care of your health and bodies and give, give, give.”
Speaking at the event, Rekha, a patient living with MPS said, “It is a heartening experience to see so many ‘super special people’ support our cause. I do not know what it is to live an illness-free day and events such as these will lead to greater awareness about our condition. I look forward to advances in medical science that will benefit generations of rare disease patients to come. I hope policy makers in India will also take note of our needs and work towards more effective and affordable treatment for patients like us.”
About Organization for 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.