From Lim Yong Hao, HAE Singapore
HAE Singapore’s membership has recently broken into double digits with 11 members, consisting of patients and caregivers. We are slowly growing and hope to reach and engage the other HAE patients and their caregivers in Singapore. There are also more physicians in Singapore who are taking care of HAE patients and in more hospitals. At a recent conference for the Asia Pacific Association for Allergy, Asthma, and Clinical Immunology in Singapore, we met many interested physicians and were excited to see how HAE Singapore can foster closer relationships with them to improve the care and management of patients in Singapore. HAE Singapore will also work with the physicians and the hospitals they practice in to become ACARE centers.
For 2023, for the first time in Singapore, HAE appeared on national television and in major newspapers where the condition received public limelight. This was an unexpected result of a feature of a HAE patient story on the morning news on Rare Disease Day. Interviews with HAE-knowledgeable doctors followed the feature in a podcast and coverage in major English and Mandarin newspapers.
HAE Singapore was also fortunate to have a three-person contingent attend the first HAEi Regional Conference APAC where we share and also learn from fellow patients and caregivers in the region. Seeing how HAE patient groups in other countries succeeded in getting access to modern treatment inspired us to want the same to happen in Singapore. The other patient groups were also very generous in sharing the lessons they learned so we can avoid the pitfalls they encountered on their journeys.
We also started a Facebook page to share news and events that are relevant to HAE in Singapore and the region. Hopefully, this page will mature and become a platform to share what is happening in Singapore for HAE to the public and for others to reach out to us.
We have many hopes for 2024. We hope to reach out to all HAE patients and caregivers in Singapore. We hope to be able to organize regular activities to build the HAE patient and caregiver community. We hope to work with the physicians to improve the current HAE diagnosis and management. We hope to kickstart the process to make more HAE treatments available. While we have many hopes, the most important would be to take the little steps that make these hopes possible.
