From Marijk Beekman-Kortekaas, President, HAE the Netherlands

Dear HAE friends

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.

Dutch Delegation at the 2025 HAEi Regional Conference EMEA in Rome

This October, ten enthusiastic representatives from the Netherlands took part in the 2025 HAEi Regional Conference EMEA in Rome. Our delegation included patients, caregivers, and board members, each contributing their unique voice to the conversations.

A special highlight for us was the participation of four young people in the Youngsters Track. Noa has been working very hard to create a Dutch Youngsters community, and we are very happy to see that our youngsters are so enthusiastic about it. They had an absolutely fantastic time in Rome, making new friends from across the region, learning more about HAE, and sharing their experiences about what it means to live with HAE in the Netherlands. We’re especially proud that Noa was invited to speak during the panel discussion ‘Voices of Change: Small Steps, Big Impact’, where she shared her perspective with confidence and heart.

Of course, we’re not only proud of Noa; we’re incredibly proud of everyone who stepped onto the stage to share their story or contribute to a panel discussion. We felt very inspired by all these different stories. We believe that storytelling and shared experience are powerful tools for connection, understanding, and change. The conference was also a valuable opportunity to connect with colleagues from other countries, exchange ideas, and strengthen our shared commitment to improving the lives of people living with HAE.

We returned home with renewed motivation, practical tools, and a deeper sense of community. Thank you, HAEi, for bringing the community together. We’re already looking forward to the next conference!

Celebrating Noa’s LEAP Graduation and her next steps

We’re incredibly proud to share that Noa has successfully completed the HAEi LEAP program. LEAP has helped shape Noa into an even stronger patient advocate, equipping her not only with knowledge and confidence, but also with practical tools that she is already putting to use in supporting HAE the Netherlands.

The LEAP program has empowered Noa to take initiative and lead with purpose. She’s currently working on an exciting project: the creation of a youngsters community in the Netherlands. Her goal is to build a safe, supportive space where young people can connect, share experiences, and grow together. We’re thrilled to see her vision take shape and are confident it will have a lasting impact.

We encourage our fellow patient organizations to consider nominating a young person for the LEAP program. Investing in the next generation of advocates is one of the most powerful ways we can strengthen our community and shape the future of HAE care.

Dr. Mats de Lange wins Young Investigator Award

We’re thrilled to share that Dr. Mats de Lange has received the prestigious Young Investigator Award at this year’s 2025 HAEi Regional Conference EMEA in Rome. Following in the footsteps of Dr. Remy Petersen, Mats is the second Dutch researcher to bring this honor home, and we couldn’t be more proud.

Mats is known not only for his scientific dedication and sharp mind, but also for his kindness and genuine commitment to the HAE community. Despite a demanding schedule, he’s offering support, insight, and collaboration with HAE the Netherlands whenever possible.

This award is a well-deserved recognition of his work and his impact. We’re excited to see where his research will lead next.

November 22: Information Day in Breukelen

We’re already looking forward to it: on Saturday, November 22, 2025, we’re hosting our Dutch annual Information Day, once again at the familiar Hotel Van der Valk in Breukelen.

The full program is still taking shape, but we can already share an exciting new feature: this year marks the first-ever youngsters program. With it, we’re creating a space where younger participants can connect, feel seen, and join in their own way.

We warmly invite everyone in the Netherlands living with HAE and their families to join us. It’s a wonderful opportunity to connect with others who live with HAE, share experiences, and feel part of a supportive community. It’s also a great chance to get up to date on the latest developments, treatments, and initiatives in the HAE world. Whether you’ve been involved for years or are newly diagnosed, we’d love to welcome you.