Member Organization spotlight: Engaging with young people and HAEi LEAP

Natasa Angjeleska, HAEi’s RPA for South Eastern Europe, facilitated a session on how Member Organizations (MOs) can reach and engage young people to recruit the advocates of the future. Natasa explored this subject with three MO representatives, two of whom had first-hand experience of the HAEi’s LEAP (Learn, Experience, Advocate, Pave the way) program and its impact on the individual participant and their MO:

• Monika Mackovikova of HAE Czech Jr
• Victoria Schultz-Boysen of HAE Scandinavia, HAEi LEAP Student participant
• Sarah L. Smith Foltz of HAE Spain, HAEi LEAP MO participant

Natasa turned first to Sarah from Spain, asking her to tell the audience about what HAEi LEAP has meant to her MO.

Sarah explained that as part of the HAEi LEAP education program, students commit to working with their MO on a project to help the HAE community. Since the HAEi LEAP program started, HAE Spain has encouraged at least one of their young people to apply. In 2025, the project “Drawing Stories” captured the experiences of HAE patients through AI-generated drawings in 10 short videos. HAE Spain now has two young people who have graduated from HAEi LEAP. The first young person is now responsible for managing the organization’s successful social media.

‘HAEi LEAP is a vital tool to get youngsters involved, interested, and committed to advocacy. Ultimately, this is how any organization is going to survive: by bringing youngsters into advocacy.’

– Sarah L. Smith Foltz, HAE Spain

Victoria brought the perspective of an HAEi LEAP participant. Her project was to create content that would support every member of HAE Scandinavia, using photos, videos, and podcasts, and to make it creative, engaging, and uplifting. Victoria explained that this eventually became a smartphone app, designed to be a ‘friend in your pocket’. She wanted to create a platform that gives you advice, makes you smile, gives you knowledge, and inspires you to have the best life you can, whether you have HAE or care for someone who does.

Monika shared how HAE Czech Jr has harnessed the potential of young people to build HAE awareness campaigns. She described an exhibition of children’s artwork, displayed at scientific conferences, medical faculties, plasma donation centers, and even the Czech Parliament building. After the exhibitions, visitor feedback was shared with the artists and their families. These encouraging words from policymakers, medical students, and scientists showed these children that their voices matter and that they can personally help raise awareness of HAE. Monika said, “For many children and teenagers living with HAE, this means a great deal as they feel seen, heard, and empowered to make a difference.”

Victoria’s personal experience as an HAEi LEAP student showed the value to an individual beyond advocacy. She remembers learning many skills she can use in her professional life, such as managing social media, developing a website, speaking in public, and conducting media interviews. Victoria acknowledged that these are also vital skills to help a young person grow as an advocate. She found the whole program really well-informed and put together.

Hearing these inspiring stories, Natasa asked Sarah about her hopes for the next generation. She said that with vastly improved treatment now and in the future, there may be less motivation for people to get involved in advocacy. But she has seen many young people stepping up to become active in HAE Spain, which is important to protect the achievements made to date and to fight for a better tomorrow.

Natasa asked Monika the same question. Monika saw that as HAE becomes a manageable condition, the next generation has the chance to reach their full potential. In time, she hopes that there will be top athletes, artists, scientists, global leaders and maybe Nobel Prize winners with HAE.

Victoria’s hope for the future was rooted in HAEi LEAP’s success. She praised Nevena and Debs from HAEi, who lead the program, and feels a sense of hope with every generation that takes part. As part of the HAEi Youngsters’ Community, Victoria also sees how, every day, young people talk, connect, and support each other. It is this ability for everyone in the community to learn from one another that inspires her.

For Sarah, her final thought encapsulated the session and the aim of HAEi LEAP. She told the audience, “We all need to educate children. Don’t hide information from them. Through education, they will develop the skills to carry on and take over.”