In 2019, RDSS held the first running event, Race for 7, to create awareness on rare disorders. Moving forward to 2020, RDSS will be organising another run called Carry Hope Run. However, due to Covid-19 situation, we launched our first virtual run, which started last year on 4th December.
Hi everyone! My name is Hope, Rare Disorders Society Singapore (RDSS) newly appointed mascot for their upcoming run! I come from UK and I travel around the world, raising the awareness for a rare condition, Pompe Disease.
Carrying me (Hope) is akin to carrying many of our beneficiaries who may not be mobile, and are fighting on in their own journey as a rare disorder patient.
I too carry their hope and dreams, in wanting an even better life as they wait for any breakthrough in the medical treatments. For some beneficiaries, their hope is to be able to express their thoughts and feelings to their loved ones, in their own unique ways.
Every child, regardless of their different needs, has the rights to live and be given the fair opportunity to grow and develop their abilities. We are here to love and offer them the quality of life.
Run! Snap! Post! Ready to join us in our very first virtual run, carrying HOPE and be a Carry Hope Ambassador? Visit the official event space at Carry Hope website.
Past Event: Race for 7 (2019)
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 the 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 regions (eg. Asia). In the EU and the 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!
Join us by clicking the link banner below: