What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes are that doctors know about HAE and how to treat it, but the cost of treatment is very expensive. This causes challenges for people with HAE who sometimes avoid taking their treatment as a result of the cost.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
Our patient group only started in 2020 which is an achievement in itself. We hope that HAE patients will have access to modern treatment at an affordable cost. As patients we are lucky to have the access (where possible) to financial assistance from the Government to assist in paying for the medication, however we have to apply and fit the criteria.
What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?
HAE is not exposed/widely known about in Singapore. Our numbers are small as there are only 15 patients with HAE. My own patient story has been written and shared with Rare Disorders Society Singapore to help spread the word about HAE. My story can also be shared on the HAEi website or anywhere else, then maybe then we have more people that are not afraid to come forward.
What support/resources have you used from HAEi? What has HAEi helped you to achieve?
My RPA Fiona Wardman has been very helpful throughout the time we have known each other. As HAE Singapore only joined in 2020, I have yet to attend conferences, workshops and I have yet to meet Fiona in person. She is so amazing and has helped me to learn and know more about the medications that are approved for HAE.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
I hope that all Singaporeans with HAE will be able to get assistance to access modern treatment via a medical fund or financial assistant.