News from Mediterranean, North Africa, Benelux and British Isles
From Regional Patient Advocate Maria Ferron
The beginning of 2026 has been an exciting and active period across the region, with numerous initiatives and events bringing our community together.
As an HAEi RPA, a key part of my role is to raise awareness of our work and the resources we have available for the community, at conferences and meetings:
- I had the honor of being invited to speak at the 2nd Edition “Complement and Kidney: Evolution in Therapy” during the session “Patient Advocacy: Embracing Opportunities in Rare Diseases”, on 6 February at Policlinico Tor Vergata Hospital in Rome, Italy. Unfortunately, due to an HAE attack, I was unable to attend in person. However, thanks to the support and flexibility of the local organizing team, I delivered my presentation online and contributed to this important discussion.
- Later in February, AEDAF held its General Assembly and Annual Meeting in Seville, Spain. During this event, I presented HAEi tools and resources to attendees. I was also joined on stage by Fabio Lagunar, a participant in the 2025 HAEi LEAP Program, who introduced the HAEi LEAP initiative, shared his project “Drawing Stories”, and highlighted the importance of engaging the younger HAE community.
- On 17 April, I had the opportunity to present HAEi and the full range of resources we offer to Member Organizations, patients, and healthcare professionals at the Pharvaris CREAATE Study Investigator Meeting in Barcelona, Spain.
In 2026, we’ve seen positive developments within our network. With HAEi support, both Ireland and Belgium are advancing their organizational development. In Ireland, this marks the first step towards obtaining charity status—a process that can take up to three years. In Belgium, the newly established Belgium Angioedema Network (BAN) held its first General Assembly on 8 March. The final step towards official recognition is the publication of its bylaws in the Belgian Official Journal.
In addition to these activities, the first quarter of the year has been particularly busy responding to requests about travel planning and patient relocation. I have assisted several families in organizing their holidays and provided guidance about relocating to different countries. I encourage everyone to use the resources HAEi offers, including our travel tips covering all our resources and the Travel and Relocation Guide, to help prepare for both short- and long-term stays abroad.
Finally, I am delighted to announce that the Women with HAE and Understanding HAE booklets are now available on the HAEi website in Portuguese. Additionally, the three children’s books by Natasa Angjeleska, including “The Rare Boy and the Talkative Little Balloon”, are now accessible in Spanish on the HAEi Youngsters website.