From Maria Beekman, President, HAE the Netherlands

It’s been a busy few months for HAE the Netherlands! We spent the better part of January Brainstorming and planning activities to raise awareness and support patients and their families in 2024. 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 that time. With this 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 a person with HAE living in the Netherlands or you’re a parent of a child diagnosed with HAE, please participate in this survey. >> Click to go to the survey.

February was the month of Rare Disease Day. Rare Disease Day or even Rare Disease Awareness Month is not a big thing in the Netherlands. The general public is not aware of how many people are living with a rare disease, and why it’s important to raise awareness.

For the first time ever, HAE the Netherlands participated in the global awareness campaign via social media. We reached quite a number of people, even though our campaign was small. On 29 February, we participated in an event hosted by the Dutch organization for rare diseases. In the afternoon, we listened to presentations about regulations, cooperation, and challenges. Afterward, we enjoyed a networking dinner. That gave us plenty of opportunities to expand our network. The evening focused on patients, patient advocates, and research. There were several presentations from researchers and patient advocates about specific research projects. We were very pleased that one of our members, who participated in an important research project, was given the opportunity to share his experiences with the audience. We’re grateful that he was willing to share his story. Awareness starts with patients advocating and sharing stories. The most important thing we learned in February is that there’s a lack of attention to rare diseases in the Netherlands. That’s why we joined a focus group of patient advocates in all fields of rare diseases to work together in raising awareness and improving the lives of people in the Netherlands living with rare diseases.

Raising awareness of rare diseases in general will help us create awareness of HAE in particular. Together, we can accomplish great things.

In March, our focus was mainly on organizing our annual patient meeting. We plan to have the meeting on 12 October 2024 in Breukelen. For people in the Netherlands: please save the date! We can’t yet share an agenda for the meeting since we’re still brainstorming. We can tell you that it will be a fun day, full of presentations and opportunities to talk to fellow patients and caregivers. Follow our social media accounts to make sure you have the latest updates on the annual meeting.