From Regional Patient Advocate Maria Ferron
The year started with the incredible news that I had gained 3 new countries as part of my Regional Patient Advocate (RPA) responsibilities: the Netherlands, Belgium, and Luxemburg, also known as Benelux.
2024 looks like a very exciting year for HAE. The countries in my region closed 2023 with a large number of advocacy activities, and this year, they are very active and have great enthusiasm to continue with the great work they are doing at the local level. You can read some of the great work done locally in our section “News From Around the World,” but here you have some examples:
The Spanish organization AEDAF (HAE Spain) has been working on several projects with pharmaceutical companies. They are also organizing its 26th General Assembly and Annual Meeting, which will take place on 13 April at Hospital Universitario La Paz, Madrid.
The President of HAE Netherland, Marijk Beekman-Kortekaas, has been actively working on setting up the association’s 2024 plans. HAE Netherlands has submitted a project for the fifth edition of CSL Behring’s European Local Empowerment for Advocacy Development (LEAD) Grants.
HAE Tunisia is running an awareness campaign in different regions of the country. The campaign they ran in the south resulted in 37 newly diagnosed patients.
In January, I had the honor to be invited to talk about HAEi and share my patient story with the BioCryst EMEA team at their internal meeting, “Shaping the Future.“ It was a great opportunity for all BioCryst employees to hear about the amazing work that HAEi is doing around the globe and to understand how their work impacts the lives of HAE patients.
February was an active month for local advocacy activities taking place thanks to Rare Disease Day on 29 February. Some examples are Dr Moussayer, President of the Alliance of Rare Diseases in Morocco and Vice-President of HAE Morocco, who organized a “Rare Diseases Day” in Casablanca, including a walk as part of their advocacy activities. In Ireland, the Member Organization lead Bettina Carty, took part in the “I Am Number 17” campaign to spread the word about rare diseases.
During March, I was also honored to be invited to two great meetings: the joint ITACA—A.A.E.E meeting in Milan from 14-16 March and the first face-to-face ADAH (HAE Portugal) annual meeting in Lisbon.
ITACA is the Italian Network for Hereditary and Acquired Angioedema, and A.A.E.E is HAE Italy. I attended the joint ITACA—A.A.E.E meeting with Michal Rutkowski, HAEi’s Vice President and Director, RPA Program. Michal had the opportunity to share HAEi’s work with the ITACA network of doctors, and we had the pleasure of hearing Stefano Del Giacco, current EAACI President, share the work that the Academy is doing.
After the ITACA meeting, I flew to Lisbon to attend the first face-to-face ADAH meeting. During the meeting, I discussed the great tools and resources that HAEi offers to Member Organizations to help associations run effectively and provided an overview of our advocacy activities. 45 Members attended the meeting, and another 20 joined online.
I am really looking forward to all the amazing activities that will take place during 2024!
