From Lim Yong Hao, HAE Singapore

In the past year, several developments have taken place for HAE patients and caregivers in Singapore, reflecting steady progress in treatment access, research engagement, and community participation.

One important milestone has been the availability of generic icatibant through a special access route. While access remains limited, this has provided patients with an additional on-demand treatment option that is more affordable and convenient than the existing option. Singapore has also seen increased participation in clinical trials for both on-demand and prophylactic modern treatments. These efforts are important for expanding treatment options and strengthening Singapore’s role in clinical research, potentially facilitating future access to new treatments.

HAE Singapore has also strengthened its engagement in health technology assessment and patient and public involvement in research. We have touched base with the Agency for Care Effectiveness and other agencies through various events, seminars, and conferences to better understand decision-making related to access, value assessment, and the use of health services data. These engagements have clarified how patient groups can work constructively with physicians, researchers, and government agencies, while remaining informed about HAE-related research in Singapore.

Community engagement has remained a priority. HAE Singapore participated in Rare Disease Day, including presenting at the Carry Hope Forum, and took part in haeday 2025, where patients, caregivers, and supporters logged over 60 activities and close to 300,000 steps. This represented the highest level of participation to date.

Looking ahead to 2026, HAE Singapore hopes to formally register as an organisation to better support advocacy and awareness initiatives and patient and caregiver support. We also aim to continue engaging physicians and pharmaceutical companies to explore opportunities to bring more treatment options into Singapore.