Rare diseases. They affect more people than the name suggests. 1 out of 20 Indians, in fact. Among these, 50% are children; sadder still, most of them die before their fifth birthday due to lack of appropriate medical intervention. The scenario worsens due to lack of early diagnosis along with expensive treatment options, which pose major hurdles in rare disease management. For the record, there are 7000 rare diseases documented so far.
But the race against rare diseases is gaining momentum. Even literally.
Come February 24th 2019, Organization for Rare Diseases (ORDI) – a team committed to addressing the challenges of rare disease patients and their families is conducting ‘RaceFor7’ – a 7km walk or run event in 9 metro cities between India and USA.
The purpose? To raise awareness about rare diseases and to empower patients and their families with access to national and international resources. Globally, the last day of February every year is commemorated as Rare Diseases Day.
In the event, to symbolically represent the 7000 rare diseases, 7000 people would be running for 7 kilometers. One of them, we’d like to believe, would be you.
Do join ‘RaceFor7’. Because only our matching strides with rare disease patients would ensure, they are not running a losing race.