Fiona Wardman, Executive Vice President and Chief Advocacy Officer

Advocacy Highlights: A regional focus

HAE advocacy works best when it is close to the nuances and needs of the people it serves. For that reason, I want to highlight a few recent projects, some of which you’ll read more about in this magazine, that showcase how HAEi continues to advance its advocacy efforts through strategic, community-informed initiatives.

HAEi listens from the ground up
The Regional Medical Advisory Panel (RMAP) questionnaire ensures our work remains aligned with the real-world needs of HAE patients and healthcare providers. The second round of the questionnaire to our physician network in countries across the world focused on barriers and needs:

• What are the common barriers faced by patients in receiving timely HAE treatment?
• What HAE-related training or information is currently available to healthcare professionals?
• What support mechanisms are most needed by patients?
• How prepared are emergency departments to handle acute HAE attacks?

By gathering these insights, HAEi ensures that our work in education, awareness, and resource development closely aligns with real-world needs. We look forward to sharing the outcomes of this data-driven initiative in the next edition.

Empowering Member Organizations (MOs), one region at a time
HAEi has developed a hands-on workshop to empower MOs with tools to drive meaningful, localized advocacy. This engaging and tailor-made pilot project launched with MOs in HAEi’s South America and Mexico region. The immersive workshop addressed specific regional needs, offering hands-on support to strengthen community impact and accelerate advocacy through concrete, actionable plans. It represents a new model of support—grounded in partnership, purpose, and progress—that we aim to expand to other regions.

Straight to video: HAE Insight Series in Asia Pacific (APAC)
A new video series, called The HAE Insight Series: Understanding HAE in Asia Pacific, has been developed to support physicians. Our State of Management of HAE survey in our APAC MOs spotlighted the levels of HAE underdiagnosis and misunderstanding in the region. We produced the films to improve awareness, understanding, and diagnosis of HAE by healthcare professionals in the APAC countries. The videos feature HAE Experts Dr Ankur Jindal from India and Prof Philip Li from Hong Kong, who cover essential themes:

• The impact of HAE
• Key HAE symptoms
• Differential diagnosis
• The difference that early diagnosis and treatment can make
• Global and local resources for support and education

There is also a video sharing real-life patient experiences from Indonesia, India, and Thailand, which reflect the human impact of the disease. HAEi acknowledges a grant from Takeda Growth & Emerging Markets (GEM), which made the development of this video series possible.

You can watch all the films in the series on the HAEi website.

HAEi’s growing footprint in Africa
HAEi has welcomed a growing number of new MOs from the African continent in recent years. We are thrilled to witness the expanding presence and influence of HAE advocacy across Africa, which has contributed to an increase in diagnoses and the emergence of new patient communities in multiple countries. To further support all groups in Africa, some fledgling and others established, we were proud to support a dedicated session on HAE at the recent 9th Biennial African Society for Immunodeficiencies (ASID) Congress in Nairobi, Kenya. This activity is part of HAEi’s ongoing commitment to the region and is made possible through collaborative efforts and partnerships with a wide range of stakeholders.

Overall, these projects reflect HAEi’s ongoing commitment to listening, partnering, and building sustainable impact worldwide. We are always looking to partner on regionally and locally-led programs and projects.

If you would like to discuss any ideas or opportunities, please don’t hesitate to contact me.