It’s hard to believe we’re already in the fourth quarter of the year! Time seems to have flown by. This past period has been filled with so many great moments. We’d love to share a few highlights with you.

We would like to start by expressing our gratitude to HAEi for the incredible 2024 HAEi Global Leadership Workshop in Copenhagen. Three of the board members of HAE the Netherlands were participating. We enjoyed the excellent agenda full of inspiring sessions on a variety of subjects regarding managing a patient organization, making an impact and advocacy. The HAEi leadership continues to listen to our needs and provide accordingly. It was inspiring to listen to our fellow Member Organizations sharing their best practices on a variety of subjects concerning advocacy. We are proud that our president was invited to share her knowledge on building and managing an HAE patient organization.

Between sessions, we enjoyed talking with old friends and making new ones. These conversations are always super inspiring. We went home with new energy and a lot of ideas to build a stronger organization, grow in numbers, and interact with our members who are not yet members.

News from the Dutch medical community:

In July, we received the exciting news that the Netherlands now has a second ACARE center: the UMCU in Utrecht. We’re very pleased with this development, and we see it as a step forward for the Dutch angioedema community. We’re looking forward to an even stronger collaboration with the angioedema team of the UMCU and would like to take this opportunity to congratulate them!  Exciting things are happening, and we’re very pleased with this progress!

We’re also excited to announce that on Thursday, October 17th, Remy S. Petersen successfully defended her dissertation titled ‘Bradykinin-mediated Angioedema, The Path Towards Complete Disease Control’. Many of you might recall that Remy received the Young Investigators Award at the EMEA conference in Munich in 2023. We are incredibly proud of her achievements and immensely grateful for all she has done for us. We wish her the best of success in her future career and will miss her dearly in the HAE community.

Now, on to the news from our organization.

During the summer, we spent a lot of time brainstorming and planning activities to raise awareness and support for patients and their families. One project we worked on was a national survey. The last time a survey was rolled out was many years ago. A lot has changed since then. With our new survey, we hope to identify where information is lacking, for instance, about new treatment options. We believe it’s also a great way to find out how people in the Netherlands living with HAE experience living with this disease. With this kind of information, we will be able to improve our services. We’re hoping a lot of people will participate in this survey. If you’re living in the Netherlands and have HAE, or if you’re a parent of a child diagnosed with HAE, we invite you to take part in this survey. Click on the following link to go to the survey: Angio-oedeem enquete HAE/AAE – Google Formulieren

And now, saving the best for last: On November 16, 2024, our annual Dutch patient day, titled “HAE and AAE: Moving Forward Together,” took place. Building on the success of last year’s event, we’re excited to make this year’s gathering even bigger and better. This time, we’re extending the invitation not just to Dutch patients but also to Dutch-speaking Belgian patients. We put together a compelling program with a blend of presentations and peer support sessions. The event was held at Hotel Van der Valk Breukelen from 10:00 to 16:00.