Creating Awareness
In 2011, we spent around 4 months to publish an information paper on how patients diagnosed Pompe
Disease receive reimbursement for their ERT.
It was a very difficult journey to begin with knowing Singapore doesn’t have any funding to support us. As a middle in-come family and staying in a condominium with our parents, this made it even harder for us to receive financial support. The mean testing was a pain in the a$%…. because it only look at our input (income) but doesn’t really take out output into consideration.
After realising what we are running into, we decided to find out more about how countries in our region support the rare disease patients with their treatments. Our work in advocating for rare disorders started in 2011 and it lead us into establishing something bigger – Rare Disorders Society (Singapore).
To know more about our healthcare system, please read on here.
