Bengaluru: The Organisation of Rare Diseases India (ORDI), Bengaluru, is all geared up for a 7Km- long run called the Race for 7 on February 28, which aims at spreading awareness about the many rare diseases in the world. This race is the organisation’s sixth such event since it started in the year 2013. This programme is unique as the participants can choose their venue which allows people across the globe to partake in this. February 28 is also observed around the world as Rare Disease Day.
The co-founder and executive director of the organisation, Prasanna Shirol talks about how the number 7 is very crucial for the organisation. “There are 7000 rare diseases in the world and other than this, 7 years is also the average number of years taken to diagnose such a disease,” he said.
“Even though there are 7000 rare diseases in the world, treatment is only available for 500,” explained Shirol, whose child also has a rare disease; Pompe.
Shirol hopes that through this event, awareness can be spread about these diseases and the patients can get the exact medical attention needed. “When people come to know about our organisation, they connect with us and call our helpline and we help them in whatever way we possibly can,” he said. “We connect them we the specialised doctors and give guidelines on the treatments available and even help to raise funds to support them,” he added.
ORDI is a national umbrella organization representing the collective voice of all patients with rare diseases in India, set up as a section 25 non-profit company. Their vision is to provide a better life for people with rare and genetic diseases. The organisation facilitates and encourages clinical trials, research & orphan drug development activities.
ORDI’s mission is to be the strong united voice for all rare diseases in India. “Continuous global dialogue is needed to reduce inequalities and to ensure that people living with rare diseases have access to the same resources as any other population,” said Shirol.
For more details and for registering in the race, check out the link http://www.racefor7.com/ or go to their website http://ordindia.in/
