Purpose: To raise awareness about rare diseases, to empower patients and their families with access to national and international resources. To offer more support to people and their family living with rare disorders in Singapore.
Rare diseases: Rare diseases are long-standing, life threatening, progressively disabling conditions that affect a small percentage of population and require multi-disciplinary care. One rare disease may affect only a handful of patients in one demographic (eg. In the EU) and another might affect as many as 50,000 in other region (eg. Asia). In the EU and United States, as many as 30 million people alone may be affected by one of the rare diseases existing. 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. But the race against the rare diseases is gaining momentum….
As per record, more than 7000 rare diseases have been documented so far.
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.
We know you care because love is not rare!
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