From Regional Patient Advocate Maria Ferron
The main focus during these last 3 months has been the organization of the 2023 HAEi Regional Conference EMEA. After hard work and the great support provided by our HAEi Conference Operations team, it was an enormous pleasure to meet up in Munich with the patients, caregivers, and physicians from all the
countries that I look after and have a focus on the region’s HAE patients. You will find a lot more information about the EMEA Conference in this magazine, and I hope this will be an inspiration to Take Action!
In June, Fiona Wardman (at the time HAEi’s Chief RPA), Patricia Karani (HAEi RPA for Sub Sahara Africa), and I had the pleasure of being invited to talk about HAE & HAEi during the 8th Congress organized by the African Society for Immunodeficiencies (ASID) held at Mohammed VI University of Sciences and Health, Casablanca. We presented to all the participating healthcare professionals. We gave an overview of the current situation of patients with HAE in those countries and introduced ourselves as a point of contact should they know about any HAE cases or want to increase their knowledge of HAE. We also distributed the Emergency Department poster developed by HAEi in Arabic, French, and English to be displayed in their hospitals to create awareness locally.
The day after the Congress in Casablanca, Fiona and I went to Cairo, Egypt, to attend the HAE Patient Workshop organized by HAEi. I took the opportunity to invite to this workshop some of the North African neighboring countries that may experience problems with their visa applications to attend the Regional Conference EMEA. We were honored to have 35 participants from Egypt, Jordan, and Libya, and 3 from Tunisia participated in the meeting virtually. During the workshop, we had the opportunity to hear from patients and physicians about the current situation in their countries. It was a great opportunity to catch up with Libya’s Member Organization and physician lead. At the end of the meeting, an open and friendly atmosphere helped attendees to talk about their personal experiences. This helps people better cope with the disease and avoid the feeling of loneliness that many patients face… it was a really great experience!
As is common during the summer months in the region I support, I received several requests from patients about where to go and who to ask for in case of an HAE emergency while traveling, the accessibility and availability of modern treatments in the country they are visiting, and any other helpful information they can use during their trips. In my responses to these requests, I always suggest downloading the HAE Companion app, which provides an easy way to access the HAEi emergency card in many languages and a list of ACARE Centers and HAE-knowledgeable hospitals and physicians.
This type of request proves the great network HAEi has created worldwide and how HAE patients are well-connected to live their lives without fear and make their dreams come true.
One of the youngsters from the Spanish association, AEDAF, joined the HAEi LEAP educational program. The youngster, Naiara, has presented to AEDAF the project on Social Media developed during the course, and the association has delegated their social media channels to her. AEDAF is really looking forward to applying for another youngster to join the LEAP 2024 program to support its local advocacy activities and prepare them to be the future leaders of the association.
We have a new country using HAEi Connect. The local association in Portugal, ADAH, is now using this tool to securely handle all their members’ personal details and communicate with them.
Finally, I am happy to announce that Libya is in its last steps to obtain access and reimbursement to the first HAE modern treatment; distribution of the product is expected by the end of the year if everything goes as planned.
