From Arbia Barhoun, HAE Tunisia

The year 2025 marked a major turning point for the HAE community in Tunisia. It was a year of growth, connection, and concrete progress. One of our most significant achievements was the doubling of the number of identified HAE patients across the country. This milestone was the direct result of our nationwide awareness tour, during which we traveled to multiple regions to raise awareness about hereditary angioedema, conduct testing, and support early diagnosis.

This tour was carried out in close collaboration with medical experts and doctors, reinforcing the crucial link between patients, healthcare professionals, and our organization. Through education sessions and testing initiatives, many individuals finally received answers after years of uncertainty, which had a profound impact not only on patients but also on their families.

Another landmark moment of 2025 was our meeting, organized by HAEi, held in April. For the first time, patients, doctors, experts, organization members, and regional advocates gathered in one space to share experiences, medical knowledge, and advocacy goals. The conference strengthened trust, encouraged open dialogue, and helped patients feel seen, heard, and supported. One lasting outcome of this event was the creation of a WhatsApp group, which now serves as an ongoing support and communication network connecting patients and professionals across the country.

Throughout the year, we also continued our advocacy efforts to secure access to HAE medication. While this remains an ongoing challenge, 2025 strengthened our foundation, unified our voices, and reinforced our determination to ensure that no patient is left without proper treatment.

Looking ahead to 2026, we carry forward strong hopes and renewed motivation. Our primary goal remains reaching more undiagnosed patients and ensuring that awareness of HAE extends to every region of Tunisia. We plan to continue and expand our national tour, traveling to new areas, increasing access to testing, and empowering local healthcare providers with better knowledge of this rare disease.

In addition, we aim to strengthen advocacy by amplifying patient voices. One of our key projects for 2026 is the launch of a podcast and interview series, featuring doctors, patients, caregivers, and especially young people living with HAE. By sharing real stories and expert insights on social media platforms, we hope to reduce stigma, spread accurate information, and build a stronger sense of community and visibility.

As always, our hopes are rooted in progress, resilience, and collaboration. We continue to believe in better access to care, improved quality of life for patients, and stronger partnerships with health authorities. Advocacy remains at the heart of our mission, and 2026 represents another step forward in this ongoing journey.

Our organization is preparing for several impactful initiatives in 2026. We are planning a special gathering on HAE Day, which will serve as both a moment of awareness and unity. To further engage the public and promote visibility, we are also exploring the possibility of organizing a symbolic race, combining health, solidarity, and advocacy.

Alongside public events, we will continue to hold meetings with authorities, healthcare professionals, and experts, strengthening institutional collaboration and pushing forward discussions around diagnosis, treatment availability, and patient rights. Awareness activities, educational sessions, and community-building efforts will remain central to our work.

While challenges persist—especially regarding access to medication—we move forward with determination and hope. Each year brings us closer to a stronger, more connected HAE community in Tunisia. Together, patients, families, doctors, and advocates continue to build a future where awareness, care, and support are not the exception, but the standard. We hope that 2026 brings further achievements, progress, and well-being to the entire HAE community.