News from Mediterranean, North Africa, Benelux and British Isles

From Regional Patient Advocate Maria Ferron

2025 highlights

2025 was a remarkable year for my region, filled with significant milestones and moments of connection. One of the standout highlights of the year was the first HAEi workshop, held in Tunis, Tunisia, in April.

. This event was a great success, bringing together 70 patients and caregivers from across the country. It provided attendees with a unique opportunity to deepen their understanding of HAE while fostering a sense of community and mutual support.

Another major milestone occurred towards the end of the year, with two impactful meetings in the Netherlands and Portugal. In the Netherlands, I had the privilege of speaking to a group of Dutch youngsters about the vital role of advocacy in advancing HAE awareness and care. In Portugal, I was honored to share valuable insights about the ACARE Centers, a critical resource for those affected by HAE. These events highlighted the importance of knowledge-sharing and strengthening connections within our community.

Lastly, working closely with my MOs, I was delighted to see strong representation from youngsters in the region in the 2025 HAEi LEAP program. The program brings young people and MOs together, strengthening relationships with the next generation of advocates. Sharing one example: Fabio Lagunar from AEDAF (HAE Spain) has delivered several wonderful HAE awareness videos as part of his project, AEDAF Drawing Stories, a YouTube channel. Fabio has also put his public speaking skills learned through HAEi LEAP into practice, participating in the organization’s patient meetings and sharing his experiences to educate others.

Hopes and goals for 2026

Looking ahead to 2026, my focus remains on addressing the challenges that persist in my region, particularly around access to medicines and reimbursement. There are still many areas where patients face barriers to essential treatments. With continued awareness initiatives and unwavering determination, I am committed to pushing forward HAEi’s vision: “To unite and strengthen the global HAE community, achieve a world free of barriers where effective treatments are accessible everywhere, and provide a higher quality of life for people with HAE.”

I look forward to working together with all of you to make this vision a reality.