Getting to know each other: Member Organization and Regional Advocacy introductions

Yong Hao Lim and Fanny Schappler, HAEi Regional Patient Advocates, alongside Fiona Wardman, Tony Castaldo, and Henrik Balle Boysen, HAEi Advocacy Leads, took to the stage to talk about HAEi’s Regional Advocacy Program in the Asia-Pacific region.

Yong Hao and Fiona began by reflecting on the 2023 HAEi Regional Conference APAC and the 2024 HAEi Global Leadership Workshop and how valuable it was for Member Organizations (MOs) to meet and share ideas and experiences.

Tony and Henrik explained that in addition to their leadership of HAEi, they support HAE advocacy in Cambodia, Laos, the Philippines, Thailand, and Vietnam. A large part of their work is to strengthen partnerships and support MOs using the activities, tools, and services that HAEi provides. Henrik indicated that their most active locations are the Philippines, Thailand, and Vietnam, with efforts underway to support Cambodia and Laos in finding motivated patients because that is the key to advocacy success.

Yong Hao spoke next as the RPA for East Asia, supporting China, Hong Kong, Indonesia, Japan, Malaysia, Singapore, South Korea, and Taiwan. He offered some highlights from these countries, which included:

  • A 2024 annual meeting of over 100 patients in China, the first since COVID
  • The success of South Korea in securing increases in available doses of on-demand treatment
  • Sites of interest across Japan lit up to raise awareness during hae day :-)
  • Regular healthcare professional workshops held across Taiwan
  • The proactivity of doctors in Malaysia
  • Educational podcasts in Hong Kong

Fanny introduced herself as the RPA for countries in South Asia, including Afghanistan, Bangladesh, India, Nepal, Pakistan, and Sri Lanka. In the six months since joining HAEi, Fanny recalled a recent trip to Bangladesh that led to over 60 doctors and patients learning from each other. Fanny remarked on the incredible resilience of the HAE community and the desire for change.

Fiona spoke next. In addition to her responsibilities in Australia and New Zealand, she also recently traveled to Nepal, where she was awed by the remarkable courage of HAE patients in the country. She also visited Bangladesh to support a physician masterclass before ending her travels in Goa, India, for the ACARE Preceptorship. This is evidence of how interest in HAE amongst healthcare professionals is growing, and she closed by saying, “having motivated healthcare professionals along with active patient advocates is key to collective success.”

Following introductions from the RPAs, each of the MOs introduced themselves in a series of short videos: