Make a difference – partnering for progress: All about HAE youngsters and the HAEi LEAP program

Throughout the conference, one of the key topics has been patient engagement and the future of advocacy. Nevena Tsutsumanova and Debs Corcoran stepped on stage to update the audience on HAEi’s work to build a community of young people and foster the next generation of HAE advocates.

Nevena told the audience that everyone in the room is building the future of HAE advocacy, and that the HAEi Youngsters’ Community (YC) supports that work. Guided by an advisory panel of young people from around the world, the community aims to represent the needs of young people with HAE and their caregivers wherever they live.

The HAEi Youngsters’ Community provides distinct sessions for young people at all HAEi Regional Conferences. To date, there have been seven Youngsters Tracks, with an eighth planned for the 2026 HAEi Regional Conference Americas in October, that have brought together more than 400 young people. The impact of these sessions, Debs said, is that something special happens. People realize they are not alone and begin to imagine a better world for themselves and their community.

In the calendar of youngsters’ programs, the next big program to support young people in HAE advocacy is HAEi LEAP. Launched in 2023 as a pilot program, the graduates have led more than 20 projects to support people with HAE worldwide. This program has been really well received, with consistently positive feedback from young participants and their Member Organizations. Indeed, in an earlier session, Sarah L. Smith Foltz from HAE Spain told participants how an HAEi LEAP graduate now manages their social media.

The next step of HAEi LEAP is just around the corner, Nevena said, with the 2026 program kicking off in Copenhagen in late April. It will consist of a series of sessions designed to build community among the young people and equip them with key skills in communication, time and project management, and leadership, to build the advocates of tomorrow.

Beyond HAEi LEAP, the Youngsters’ Community offers an environment for learning through internships, podcasts, and articles. Ultimately, the HAEi Youngsters’ Community is there to give young advocates the tools to make a difference.

In summing up, Debs explained that HAEi’s goal is to spark the conversations, friendships, and ideas needed to bring the future one step closer. Supporting and listening to young people is crucial to that goal, and will mean that the future for the HAE community is extremely bright.

‘It is part of our collective responsibility to inspire the next generation. And, our amazing young people, their ideas, creativity, and courage can inspire all of us.’

– Nevena Tsutsumanova, HAEi Manager, Events and Special Projects