Race for 7:
#Racefor7 is a 7000 Meters walk for the cause of over 350 million patients with rare diseases with a significant public health burden globally. The run occurs simultaneously in Bengaluru, Mumbai, and around the Washington Monument on the 25th, last Sunday of Feb. The walk in USA will extend a global chain of ~7000 runners in India. ORDI and Racefor7 exhibit at the National Institutes of Health annual rare disease day event #RDDNIH.
Purpose:
- Engage patients as key stakeholders in clinical research programs including global clinical trials - particularly US.
- Accelerate awareness, advocacy and policies for rare diseases and orphan drugs in India building upon best practices from US and EU efforts.
- Bring all stakeholders (patients, industry, government policy makers, scientists, and physicians) together on a common platform and facilitate innovation in the field of rare diseases.
Rare diseases:
US became the first country in the world to adopt an Orphan Drug Act in 1983 that incentive research and development of drugs for rare diseases. Globally there are 350 million patients affected, ~30 million in USA, >70 million in India. There are about 7000 rare diseases known so far and more are being discovered. It still takes an average 7yrs to diagnose a rare disease even in US/EU.
Most of the innovative medicines are discovered and developed first in US/EU or Japan. India has largely been successful in low cost manufacturing of generic drugs or biosimilars addressing the bottom of the pyramid in Asia and African countries. Thus, patients in India have been mostly excluded from majority of the clinical trials of innovative medicines. Hence, many drugs may not be effective on Indian population or show adverse drug reactions not seen in Caucasian population.
To learn more, refer to published review article: Rajasimha HK, Shirol PKB, et al., Organization for Rare Diseases India - Addressing the Challenges and Opportunities for Indian Rare Diseases’ Community; Genetics Research 2014.
Racefor7 symbolizes the 7000 rare diseases with 7000 people walking for 7000 Meters.
One of them, we’d like to believe, would be you.
Do join ‘Race for 7’, because only our matching strides with rare disease patients would ensure they are not running a losing race.
Rare Disease Day: Globally, the last day of February is commemorated as Rare Diseases Day since 2008. Click here to know more about Rare Disease Day.
