News from Mediterranean, North Africa, Benelux and British Isles

From Regional Patient Advocate Maria Ferron

I am delighted to share some of the latest achievements from across my region, showcasing how our collective efforts continue to make a real difference for people living with HAE and their families worldwide.

In September, I had the honor of attending the AEDAF (HAE Spain) II Regional Workshop for the Autonomous Region of Castilla y León, held in Valladolid, Spain. During this event, participants heard valuable advice and insights from Fabio, a young community member who joined the HAEi LEAP class of 2025, and I presented HAEi’s tools and resources.

A key part of my RPA role is supporting the translation and availability of resources into local languages. I’m thrilled to share that the ‘Women with HAE’ and ‘Understanding HAE’ booklets are now available in French, thanks to the dedication of the Moroccan association and the support of Prof Laurence Bouillet from France. In addition, ‘The Rare Boy and the Talkative Little Balloon’ and ‘HAPPINESS: Discussion Between the Rare Boy and the Talkative Little Balloon’, two wonderful children’s books created by Natasa Angjeleska (HAEi RPA for South Eastern Europe), have been translated into Spanish by members of AEDAF. These will be available on the HAEi Youngsters website: youngsters.haei.org. These milestones will help even more people with HAE and their caregivers access essential information in their native language.

HAE Ireland is exploring potential legal frameworks to register as an official association—and I’m delighted to support them with this vital step toward strengthening their advocacy and visibility.

HAEi’s Principles for Good Governance have been shared with all MOs in our region.

Another exciting update: HAEi LEAP is returning in 2026! I have been sharing this announcement across the region to inspire and recruit the next generation of young leaders, who, with the support of their MOs, are eager to become our future advocates.

Finally, I would like to express my heartfelt thanks to all participants from our region who contributed to the 2025 HAEi Regional Conference EMEA. Your active involvement and collaboration made the event a truly positive and memorable experience. Together, we continue to build a stronger, more connected HAE community—one that uplifts, empowers, and supports every member across the region.