From Marijk Beekman-Kortekaas, President, HAE the Netherlands
Reflecting on 2025 and Looking Ahead: HAE the Netherlands
As we close the year 2025, I feel proud to look back on what we have achieved together as HAE the Netherlands. This year has been filled with milestones that strengthened our community and given us new energy to move forward.
Patient Information Day and Members Day
One of the highlights of the year was our Patient Information Day. This event has become a cornerstone of our work, offering patients and families the chance to learn about the latest medical developments, treatments, and research. But beyond the science, it is also a day where people can share their personal stories, ask questions, and feel the support of others who truly understand what it means to live with HAE.
Earlier in the year, we hosted our Members’ Day, which was equally special. This gathering is always a moment of celebration, where we reflect on what we have accomplished as an association and discuss the challenges that lie ahead. It is a day filled with energy, laughter, and solidarity. For many of our members, these events are not just informative; they are a lifeline, a reminder that they are part of a larger family.
The Success of Noa and the Youngsters’ Community
Another milestone in 2025 was the success of Noa, who completed the LEAP program. Her project, creating a youngsters’ community for HAE patients, is now well underway. This initiative is incredibly important. Young people living with HAE often face unique challenges: navigating school, friendships, relationships, and future plans while managing a rare disease. Having a dedicated community where they can connect, share experiences, and support each other is vital.
Noa’s work shows us the power of youth leadership. She is building something that will last, something that ensures the next generation of HAE patients has a voice and a platform. Watching her progress has been inspiring, and it gives me confidence that the future of our association will be shaped by young people who are passionate, creative, and determined.
Our Role in the National Alliance for Rare Diseases
On a national level, HAE the Netherlands continues to play a leading role. We hold the most important seat on the board of the Dutch National Alliance for Rare Diseases, which gives us a strong position to advocate for patients not only with HAE but across the spectrum of rare diseases.
Through this alliance, we are actively involved in drafting the new National Plan for Rare Diseases, which will be launched in 2026. This plan is a crucial step forward. It will set the agenda for how rare diseases are recognized, treated, and supported in the Netherlands. Being part of this process means that the voices of patients are heard at the highest level. It ensures that our experiences, our struggles, and our strengths are reflected in national policy.
The Power of the Global HAE Community
What makes these achievements even more meaningful is that they are part of something bigger: the global HAE community. Across countries and continents, we are united by shared experiences and a common mission. We learn from each other, we inspire each other, and we support each other.
The progress we make in the Netherlands is connected to the progress being made elsewhere. When one country develops new initiatives, others can follow. When one patient shares their story, it resonates across borders. Together, we are stronger than the challenges we face. Together, we can achieve more than any of us could alone.
This sense of global solidarity is what gives me hope. It shows that HAE is not just a rare disease; it is a worldwide movement of patients, families, doctors, and advocates working side by side. And it proves that when we join forces, we can change lives and shape the future.
Looking Ahead to 2026
As we look forward to 2026, our hopes are clear. We want to continue building on the successes of 2025. That means once again organizing both a Patient Information Day and a Members’ Day, ensuring that our community has opportunities to come together, learn, and celebrate.
But we also want to take an exciting new step: for the very first time, we plan to host a special event dedicated to young people living with HAE. This event will be designed specifically for them, giving them a platform to share their experiences, ask questions, and build connections. We believe this will be an important milestone in our work, one that strengthens the youth community and ensures that younger members feel seen and supported.
Conclusion
2025 has shown us what we can achieve when we work together. It has been a year of connection, empowerment, and progress. As we move into 2026, we are determined to build on these successes, to strengthen our community, and to ensure that every voice, young and old, is part of the future of HAE the Netherlands.
Together with the global HAE community, we will continue to make HAE visible, to advocate for better care and support, and to create a world where everyone living with HAE feels heard, valued, and empowered.
