News from Mediterranean, North Africa, Benelux and British Isles

From Regional Patient Advocate Maria Ferron

2025 has started with a lot of energy! MOs and patient groups are setting their yearly goals and planning and organizing awareness-raising and advocacy activities for the year. I’m on standby to help with any ideas or advice and offer my support or information about HAEi resources if needed.

Here are some of the highlights during this period:

  • The patient leads in Belgium & Ireland are working hard to officially register the association in their countries. Through discussions with both organizations, this is a vital step to be able to make progress.
  • I have been working with MOs to have the “Women with HAE” booklet translated into Portuguese, Belgian, and Dutch and the “Understanding HAE” booklet translated into Belgian & Dutch. You can now find the translated booklets on the HAEi website under “Resources.”
  • Seeing, and in some instances supporting, MOs advocacy activities to celebrate hae day :-) – more to come in the next edition!
  • A focus on websites and refreshing information online. Spain has launched their new website (https://angioedema-aedaf.org/) and I’m helping Morocco with the process of updating their web presence.

This period has also been busy with meetings and workshops. The first was on 22 February in Hospital Universitari Vall d’Hebron, Barcelona, Spain. Around 100 patients, caregivers, healthcare professionals & industry representatives participated. I had the opportunity to talk to attendees about the tools, resources, and activities that HAEi offers to the patients and MOs. I also had the chance to talk about the Shared Decision Making tool during the presentation from the Coordinator of Citizen Attention and Participation of the hospital.

The second meeting of 2025 is the 4th National Congress ITACA & A.A.E.E (HAE Italy), from 27 to 29 March in Palermo, Italy. The Congress, organized by the Italian Network for Hereditary and Acquired Angioedema (ITACA) under the patronage of the A.A.E.E., covers key issues related to all forms of angioedema in adults and children and includes the participation of leading national and international experts. HAEi CEO and Chairman of the Board, Anthony J. Castaldo, presented on “HAEi and the global world of angioedema,” and HAEi President Henrik Balle Boysen gave a talk on “HAE and the patient’s journey.”

Last but by no means least, I have been coordinating the first HAEi organized HAE patient workshop in Tunisia. We expect around 70 attendees, and when not working on the logistics, I’m planning a really exciting agenda that will promote disease education among patients and healthcare professionals, including video talks with international speakers and Mohamed Osman, HAEi Advocacy Facilitator MENA, who will give our talks in Arabic.