Learning from HAEi LEAP

HAEi LEAP is an education program that helps young people learn new skills and develop as individuals and advocates. Young people will also have the chance to gain experience working with their MO, and to apply all they’ve learned on a project to support advocacy, their MO, and their community. HAEi provides a one-time grant to support delivery of the project once it’s underway.

Fabio, Drawing Stories from Spain to the world

Fabio’s project was to develop a YouTube channel called AEDAF Drawing Stories (AEDAF is the Spanish language acronym for the Spanish MO). The project aimed to tell the stories of patients from around the world through illustration and narration. Fabio told us that, “This format allows me to highlight the conditions, limitations, and resources available when facing similar circumstances in different countries. In addition, the project helps raise awareness among people who may not know that there is a global network of patients who form a supportive community.”

We asked him how he felt now that his project was nearing completion. He said, “I am very proud of the result. Although there is still work to be done to complete it, what we have achieved so far is remarkable. The response has been very positive. People from the Spanish community, my home country, have congratulated me and follow every video closely. At the same time, many international viewers also watch and engage with the content.”

Working with their MO can be a new experience for many HAEi LEAP Students. We asked Fabio what it was like working with his MO, “They are extremely approachable and supportive. They try to help me with everything I need. In my case, they assisted me in connecting with people from different countries so I could create the videos,” he said.

Fabio praised the HAEi LEAP 2025 courses as being very interesting, although he admitted they challenged his expectations, but in a good way – by being even better! He said: “The courses cover a wide range of topics that are extremely valuable and difficult to learn elsewhere in such a clear and concentrated way.”

And Fabio’s advice to young people considering being part of a future HAEi LEAP was clear, “Simply apply!” he said, “It may feel intimidating at first, as anything worthwhile often does, yet it is an experience they will not regret.”

‘After experiencing HAEi LEAP firsthand, I realized that everything positive I had heard about the program was absolutely true.’

– Fabio, HAEi LEAP 2025 Student

Sarah Smith Foltz, who leads AEDAF (HAE Spain), reflected on HAEi LEAP and Fabio’s project, praising the unique, original idea of telling stories this way. She felt it helped draw attention to the different ways an HAE patient’s story can differ from one country to another.

Sarah was effusive in her praise for Fabio, “Our youngster, Fabio Lagunar, has been a delight to work with, as he has taken his project seriously and been very diligent and committed to completing it.” Commenting on why an MO should get involved with HAEi LEAP, she said, “Take the program seriously and consider finding one youngster from your country who wants to apply for HAEi LEAP. It’s a great experience in many ways, and involving youngsters is essential for every MO. Youth are the future for all our organizations.”

Noa, building an HAE youth community in the Netherlands

Noa’s project has a big goal: to start a community for youngsters in the Netherlands. She told us, “I really wanted to create a community, because we didn’t really have anything for youngsters in the Netherlands, and I felt it was necessary to create a space where young people could come together.”

Starting with an Instagram account, Noa reached people, and by November 2025, the group had grown enough to hold its first get-together during an HAE event in the Netherlands.

Noa credits her ability to break down a big idea into manageable chunks to the HAEi LEAP teaching: “At first, I was a bit overwhelmed, because I didn’t realize how big my project actually was. With the help of my peers, Nevena, and Debs, I was able to create a plan for how to approach everything step by step. It was nice to brainstorm together with others who were working toward similar goals.” The skills she learned would be helpful beyond just this project: “The online courses helped me with the practical side of things: how do you organize an event? What works in the world of social media? And more. These are all skills that aren’t just useful for this specific project, but also for my studies in university and for future jobs.”

Like Fabio, Noa enjoyed working with her MO. In particular, Noa said they really trusted her, giving her the freedom to shape the project. She said, “We definitely don’t want to turn into a ’55-and-up’ club, so bringing in younger people is essential. It helps secure the future of the organization.”

Marijk Beekman-Kortekaas, head of HAE Netherlands, was similarly effusive in her praise for Noa and the HAEi LEAP program. She said: “Working with Noa on this project was genuinely a joy. Thanks to the HAEi LEAP program, we were able to give Noa the opportunity to take on this project, and that made all the difference. Through her work, we were finally able to connect with young people in a meaningful and authentic way.

‘Noa, our HAEi LEAP 2025 student, created a safe, vibrant group where youngsters could ask questions, share experiences, and feel seen. For HAE Netherlands, this project wasn’t just valuable; it was a breakthrough.’

– Marijk Beekman-Kortekaas, HAE Netherlands

Asked what she would say to young people considering HAEi LEAP, Noa is unequivocal: “Just do it! If you have any questions or doubts, you can always reach out to MOs; they will be happy to answer them. We are all lovely people – we don’t bite!”

Winona builds an HAE community in South Africa

Finally, we heard from Winona from South Africa. Like Noa, her ambition was to create a safe, youth-focused platform where young people living with HAE can connect, communicate, and support one another. The HAEi LEAP courses helped her turn an idea into a structured, realistic project. She also felt that: “HAEi LEAP gave me practical tools as well as confidence in my ability to lead and implement a project.” In addition to the support of HAEi, Winona found working with her MO a positive and supportive experience.

With the community now live, Winona expresses satisfaction with what’s been achieved: “Seeing the project move from an idea to something real has been very motivating. I feel proud that I have created something that can make a difference in the lives of other young people with HAE.”

Echoing all of the HAEi LEAP graduates we spoke to, Winona feels that the program is a special and important one: “I would strongly encourage people to apply. HAEi LEAP is an incredible opportunity to grow personally, build leadership skills, and make a real impact within the HAE community.”

Janice Strydom, who leads HAE South Africa, felt that HAEi LEAP was a valuable tool for empowering young people in HAE advocacy. She said: “We strongly encourage other MOs to enrol a youngster in the HAEi LEAP programme. It is a valuable investment that strengthens both the individual and the organization. It encourages young people to find their voice, participate in advocacy, and take ownership of their role within the patient community.”

All the HAEi LEAP participants and their MOs expressed their gratitude for the opportunity to participate, feeling that it was crucial to empower the next generation of HAE leaders.

‘HAEi LEAP nurtures future leaders who can strengthen patient organizations and represent patient perspectives locally and globally.’

– Janice Strydom, HAE South Africa

HAEi LEAPing into 2026

The HAEi team is currently finalizing applications for the HAEi LEAP Class of 2026, with an announcement on the new students expected very soon. You can stay up-to-date with all things youth on the dedicated HAEi Youngsters’ Community and HAEi LEAP websites.