News from Mediterranean, North Africa, Benelux and British Isles
From Regional Patient Advocate Maria Ferron
2024 Highlights
2024 has been a remarkable year for the global HAE community. In my region, we saw many significant events and developments underscoring our collective commitment to raising awareness and fostering patient support. Highlights include:
- In March, the inaugural face-to-face ADAH (HAE Portugal) meeting was held in Lisbon. During this event, I was privileged to introduce HAEi’s comprehensive services, tools, and resources to attendees, enhancing understanding of HAE and its management.
- In Barcelona, the 9th CSL HAExpert Face-to-Face Meeting (for healthcare professionals) served as another vital platform for raising awareness about HAE and the valuable initiatives HAEi undertakes.
- We witnessed the appointment of a new patient advocate in Belgium, who is actively working to register a national HAE association, fostering community support (the Dutch association has been- and is- a great support) and resources for local patients.
- In Ireland, our new patient lead has been engaging in various activities to raise awareness and advocate for HAE patients, reinforcing the critical need for ongoing support and education in the country.
I’m delighted to see the progress in my region’s countries, ensuring a brighter future for patients worldwide.
Hopes for 2025
- Try to establish a patient group in Mauritania.
- Organise the first HAE meeting in Tunisia.
- Keep helping Member Organizations implement the tools and resources that we offer to run their associations/patient groups smoothly.
- And keep working to help provide access to HAE modern treatments to as many patients as possible.