It’s hard to believe that we’re already wrapping up 2024. Time seems to have flown by. So many great things have happened since January. We’d love to share a few highlights with you.

At the beginning of the year, HAE The Netherlands identified some focus points for 2024. We wanted to grow our network, we wanted to take a step forward in providing information about HAE, and our most important focus point was bringing the community together.

We managed to be successful on all 3 points.

Our network grew significantly. We managed to build relationships with several HAE specialists, strengthened our international network by connecting with several sister organizations, and got in contact with all the pharmaceutical companies within the HAE community. Besides that, we built a network within the Dutch Rare Disease Community. We believe in partnership to improve the lives of people living with rare diseases, particularly those with HAE. We also became members of RIPAG, the patient advocacy group of ERN-RITA, the European Reference Network for Rare Immunological Diseases. Within this network, we work together with HAE Junior, our Czech sister organization, to bring the HAE patient perspective into the network.

In the field of providing information to the Dutch HAE community, we celebrated the first edition of our own magazine. This is a magazine that provides articles about HAE, our organization, and our HAE specialists. Furthermore, it includes patient stories. We’re hoping to publish this magazine twice a year. We also completed the Dutch and Belgian translations of Understanding HAE and Women with HAE. Thanks to the hard work of the HAEi team, these translations will soon be available on the website. In 2025, we will have both booklets printed to distribute to the Dutch HAE community.

We also managed to bring the Dutch HAE community together for a fun day full of informative presentations and peer support. On 16 November, we organized our annual patient meeting. We saw a significant increase in the number of participants compared to 2023. We are pleased to see this significant increase because it is important and beneficial for people living with HAE to come together.

On this day, we enjoyed excellent presentations about the pathophysiology of HAE, ethical dilemmas in research, and current and future treatment options.

The interaction between the speakers and the participants was very special. So many good, informative questions were asked, and we ran over our planned time schedule. We were very pleased that all the speakers stayed to join us for lunch. During lunch, we observed a lot of fun conversations between speakers, patients, and caregivers. There was also a lot of peer support going on. Bringing the community together is so important.

In the afternoon, we enjoyed a special presentation from our RPA, Maria Ferron. She inspired the participants to become advocates and stated that it’s important that patients not only advocate for themselves but that they help the patient organization to advocate for the whole community. Maria knows how to bring the HAEi perspective to the countries under her umbrella. She also shared with us some preliminary data on the management of HAE in Europe study HAEi did this year. We’re very grateful that she and Debs were willing to share this with us, even though the data is still being analyzed. We can’t wait to read the finished report. All in all, it was a fun day full of enjoyable conversations. Next year, we’re planning to organize more frequent meetings to bring our community together.

Looking ahead to 2025, we express our hope that the global HAE community will become even more connected. By coming together, we can collectively achieve our goal of a normal life for all patients.

To conclude, we would like to wish everyone happy holidays.