From Maria (Marijk) Beekman-Kortekaas, President HAE The Netherlands
It’s hard to believe that we’re already wrapping up the year. So many great things have happened since January.
We worked hard to reinvigorate HAE The Netherlands. We managed to create a new website. We’re grateful that our HAE specialists at the ACARE center in Amsterdam found time to help us by checking if the information on our website is correct and in understandable language. It’s not completely finished yet, but it’s online, and it provides the most important information on HAE for people living with HAE in The Netherlands. In 2024, we will continue working on improving the website.
On 7 October 2023, we hosted a live event for HAE and acquired angioedema (AAE) patients in the Netherlands. It was the first time since 2019 that we were able to meet in person. Besides that, it was the first event organized since changes in the leadership of our organization took place. It was a fantastic meeting! In the morning, we listened to presentations about the pathophysiology of HAE, the disease burden, personal and societal costs of HAE, and the latest developments in HAE science and therapies. The interaction between the speakers and the attendees was wonderful. A lot of good, important questions were being asked. We’re grateful that our doctors took the time to answer all our questions. In the afternoon, we learned about what we as patients, can do to improve our quality of life. We learned a lot about the research that is currently taking place at the ACARE center in Amsterdam, where we, as patients, can take part. At the end of the day, we had the pleasure of listening to our special guest, Maria Ferron from HAEi. She told us all about the fantastic tools and resources of HAEi and encouraged us to use them. It was amazing that Maria traveled all the way to Breukelen to attend our meeting. Thank you, Maria. Next time you visit, we will make sure we have a translation service in place. I think it’s safe to say that we all had a lovely day and that we were happy to meet old HAE friends and make new ones. We will definitely do it again next year. Preparations will start soon.
In the last few months, we have had a lot of meetings with our pharmaceutical company representatives about projects to help the Dutch HAE community move forward. It’s nice to see that we share the common goal of improving the quality of life of people living with HAE. We have lots of exciting projects in the pipeline.
I want to finish by wishing you all a lovely holiday season and best wishes for 2024!!
