From Regional Patient Advocate Maria Ferron
The second quarter of the year has been exciting.
During this period, one of the main highlights has been assisting all Member Organizations in completing the registration process for the 2024 HAEi Global Leadership Workshop in October. All Member Organizations eagerly await this workshop, and they are excited to come together and stay updated on the latest developments and news in HAE and HAEi.
In addition to facilitating the workshop preparations, I also dedicated my time to building relationships between the patient lead in the Benelux region and pharma companies. Establishing these connections is crucial for fostering collaboration and ensuring the continuous advancement of HAE advocacy activities.
April was particularly eventful; I was honored with invitations to two significant meetings. On 19 April, I gave a talk during the 9th CSL HAExpert Face-to-Face Meeting in Barcelona. It was a wonderful opportunity to share my journey with HAE and showcase the remarkable activities and resources provided by HAEi to Member Organizations. This presentation allowed me to raise awareness among doctors attending the meeting, allowing them to understand better the challenges HAE patients face and the support available to them.
Furthermore, on 26 April, I participated in the 26th AEDAF Annual Meeting, held at the Hospital Universitario La Paz in Madrid, Spain. This event provided an excellent platform to bring attention to HAE and HAEi and inspire healthcare professionals to further their understanding and involvement in managing this condition.
Moving into May, I had the pleasure of talking to the audience that attended the CSL Behring-sponsored Symposium during the EAACI meeting in Valencia, Spain. With Dr. Guilarte (Vall d’Hebron Hospital), we introduced the importance of using Shared Decision Making tools in every patient visit and achieving the treatment goals presented in the last WAO/EAACI guidelines.
May is a particularly exciting month for the HAE community worldwide. Many Member Organizations around the globe were busy with activities and organizing various events and initiatives to commemorate hae day :-). This special day is a time for the HAE community to come together, raise awareness, and advocate for approval and reimbursement of lifesaving therapies to everyone suffering from HAE.
As the second quarter of the year draws to a close, it is clear that the HAE community is united in its efforts to improve the lives of individuals living with this condition. With the upcoming 2024 HAEi Global Leadership Workshop and continued collaborations with the ACARE centers, healthcare professionals and pharma companies, we are forging ahead to create a brighter future for the HAE community.
