EMEA youngsters embracing opportunities
Friday evening – welcome to EMEA!
The first session of the 2025 HAEi Regional Conference EMEA HAEi Youngsters’ Track started in a lively fashion, with introductions to a fun-filled and welcoming (except for moms and dads) space for young people to enjoy and express themselves.
Presenting the HAEi Youngsters’ Community
Nevena Tsutsumanova, HAEi Manager, Events and Special Projects, and the driving force behind the HAEi Youngsters’ Community, invited all of the almost 90 young people to relax and enjoy the next few days of learning and laughing together. She asked Dominika, Winona, Eirini, Ania, and Daniella from the HAEi Youngsters’ Advisory Group to explain the community a little bit.
‘The Youngsters’ Track is the place where the advocacy leaders of tomorrow are made.’
The young advocates asked the audience to think about what community means to them, with answers ranging from teamwork to family and a sense of belonging. They then provided a brief run-through of programs available to youth advocates to learn more and gain skills, including social media internships, the HAE Let’s Talk podcast, and many volunteering opportunities.
Some fun questions followed, even asking the young people to invent the name for an HAE superhero, with Swell Girl winning!
Welcome to HAEi LEAP 2026
Nevena returned to the stage, this time joined by Debs Corcoran, HAEi Director, Research. Between them, they explained the LEAP (Learn, Experience, Advocate, Pave the way) program, which is open for applications in 2026. They encouraged young people to think about putting in an application, in combination with their Member Organization, as the rewards in terms of education and financial support to progress a passion project were real.
Debs then provided a sneak preview of some of the education available in LEAP. Time management might not seem the most exciting topic, but delivered with heart and enthusiasm, it captivated the young people.
‘Strong communication skills underpin great time management.’
The Friday session drew to a close with the chance for the young people to share food and experiences before joining everyone for dinner.
Saturday session
Young people with HAE and youth caregivers assembled once again on Saturday morning, where the uniqueness of the experience was discussed. In this space, no one needed to explain HAE or their own life; everyone present will understand.
Getting to know each other
The morning started with a brief icebreaker session, in which young people were invited to learn more about their fellow participants, particularly by finding out each person’s ‘golden egg’, or something hidden about them. One participant even shared that their father took part in the Eurovision Song Contest!
Welcome from HAEi Leadership
The Youngsters’ Track then welcomed HAEi’s Executive Vice President and Chief Operating Officer, Jørn Schultz-Boysen, and Executive Vice President and Chief Advocacy Officer, Fiona Wardman. Both secretly expressed their wish to be in the Youngsters’ Track rather than being stuck in with all the grown-ups, but knew they weren’t allowed. The HAEi leaders encouraged everyone present to take the opportunity to make new friends, renew old friendships, and get the most out of the sessions.
Before leaving, Fiona and Jørn shared what they feel are the qualities of a good advocate. These were:
- Be persistent
- Be kind
- Never give up
- And perhaps most importantly, keep smiling!
The power of advocacy
Nevena led a session in which young people were given insights into what advocacy means and how advocacy, even the actions and words of just one person, can make a difference. The talk drew upon the lives of some famous advocates, including:
- Mahatma Gandhi, who challenged injustice through peaceful means
- Malala Yousafzai, who faced violence just to call for the right to education
- Nelson Mandela, who forgave those who oppressed him and millions of others
- Havana Chapman-Edwards, who made a stand against gun violence
- Rick Hansen, who highlighted the challenges of travel for people with disabilities
None of these people was born an advocate. They become advocates because they believe in something and stand up for it. Nevena encouraged everyone to feel confident in their own ability to create change, whether big or small.
Face2Face with an HAE expert
The agenda moved on to an eagerly anticipated session, where HAE experts, Professor Danny Cohn and Professor Markus Magerl, answered questions posed by young people. Prof Magerl spoke with those aged 12-17, while Prof Cohn chatted with those aged 18-25.
Questions were wide-ranging, but there were many about traveling with HAE (something you can read more about in the patient track write-up). Prof Cohn suggested that before heading away, people with HAE should talk to their doctor; a change in medication or dosing might make the trip easier and more enjoyable. A follow-up query related to what to do when traveling to a country with no HAE-specific medication. Prof Cohn suggested making sure to be informed about what can be done in an emergency, even if it’s treatment with fresh frozen plasma.
That led on to a question about what frozen plasma is. Prof Cohn explained that it is the part of human blood that contains proteins but no blood cells. This naturally includes some C1-inhibitor from the human donors, so by giving large amounts, you can replace the missing C1-inhibitor in the blood of people having an HAE attack.
A young person asked whether there are other diseases linked to HAE that people with the condition might also have? Prof Cohn said he wasn’t aware of anything. Hives are often mentioned as a super common issue, but they are not linked to HAE.
There was a question about tattoos, a popular topic at HAEi conferences, and when treatment might be needed following the procedure. Prof Cohn suggested that if a patient is well-controlled on long-term prophylaxis, then just having an on-demand treatment available in case of a breakthrough attack will be enough, but this depends on the individual and their HAE.
One youngster asked: ‘How should a young patient approach talking to their doctor, especially if the doctor can be intimidating?’ Prof Cohn admitted that he understood how intimidating some doctors can be, but that many doctors, like him, work very hard to be open and welcoming. He said the key thing to keep in mind is that you matter. You are the one with HAE, taking treatment and living your life.
At this point, Faye Marshall, a nurse specialist and HAEi’s frequent poet collaborator, shared her perspective as a healthcare professional and someone who also lives with a rare disease. She asks her clinicians, “Can I tell you what’s most important for me?” This gives the young person the chance to say how they really feel and explain their own life, hopes, and ambitions.
Back onto treatment, Prof Cohn was asked about the usefulness of combining treatments. His view is that if one treatment isn’t working, combining different therapies for HAE could be helpful. However, this is again something very individual for patients.
A youngster asked what doctors do to earn their patients’ trust. Prof Cohn said he couldn’t speak for every doctor, but he and many others start by proving themselves. With every new patient, he schedules their first appointment at the end of the day so he has as much time as possible to listen and understand without distractions. It is actions like that which show how much the doctor cares and is engaged in the best care for people with HAE.
A final, very thoughtful, question was posed about when to draw the line between being a patient and being an advocate. For Prof Cohn, that could only be a personal decision. Some things might impact it, such as whether there’s a long family history of HAE or if the young person is the first in their family to have the disease and needs to advocate for themselves constantly.
Guided conversation: Voices of change
Faye Marshall picked up the microphone, this time as the facilitator of a conversation about HAE advocacy and living with the condition as a young person. She welcomed onto the stage Ognen from North Macedonia; Ania from Poland; Noa from the Netherlands; Daniella from Mozambique, and Winona from South Africa.
‘I think being part of this community also inspires us. We could hold a pity party and feel sorry for ourselves. But then you're surrounded by these people who travel all around the world, have these conversations, and connect.’
The focus, Faye said, was on the journeys people have taken with HAE, whether as patients or caregivers.
A lively discussion followed, covering the following topics:
- What makes people feel powerful? With answers ranging from not being scared to express an opinion, music, exercise, setting achievable goals, and helping other people.
- What to do with bullies or people who would make you feel small? Have a small part within yourself that knows what makes you feel good, and tap into it whenever you are troubled. Also, the importance of not letting others use anything you think is a weakness.
- What to do about change? The group discussed how change can trigger HAE, but it can also spur new opportunities.
- How to talk to people about HAE? This included being clear that HAE can be part of your identity, not a burden to be carried, and the importance of diagnosis as a potential source of joy for those seeking answers.
The panel shared their final thoughts: don’t be shy and spread kindness whenever you can.
The Youngsters’ Track ended with all participants taking part in an exercise to find and hold on to small gestures, acts, or phrases that have made them feel stronger, and to create ripples of change through the things they will do to improve the world in which they live.