APAC youngsters – advocacy, inspiration, and fun!
In common with HAEi Regional Conferences in EMEA and the Americas, young people from across the Asia-Pacific region gathered in Manila for a specifically tailored program of advocacy, activities, and fun, led by Nevena Tsutumanova, Manager HAEi Youngsters’ Community and Special Projects.
The Youngsters Tracks are closed, safe spaces for young people to gain knowledge, ask questions, and, most importantly, build friendships with HAE patients and caregivers – just like them. In Manila, 25 patients and caregivers from 7 countries participated in networking and fun.
Nevena told Global Perspectives that all Youngsters Tracks start slowly, with young people unsure what to expect. “I see the hesitation on their faces,” she said. But that nervousness soon disappears, and Nevena continues: “A lot changes in a short time. The same faces light up with smiles. People exchange contacts and chat over coffee.”
“The Youngsters Track opens peoples’ minds to different possibilities.”
Nevena Tsutsumanova
Planning the program
The Youngsters Track at any HAEi Regional Conference is developed in collaboration with the HAEi Youngsters’ Community Youngsters’ Advisory Group (YAG), to ensure that all the sessions and content are relevant and useful to the young people participating. We included sessions about HAE and wellbeing and prioritized a more relaxed, facilitated discussion session to make it easier for youngsters to share their experiences – a critical part of the HAEi Youngsters’ Community.
Hearing global stories
Of course, as the name suggests, this regional conference was focused on the Asia-Pacific region. However, Nevena knows that many of the issues young patients and caregivers face are similar across the globe. To help facilitate conversations, the team collected a series of stories from across the HAEi Youngsters’ Community and shared them with the group in Manila. The stories provided a potent way to start conversations, even on tricky topics like resilience and overcoming stigma. Nevena told Global Perspectives: ‘It was wonderful to see the engagement these stories provoked and the questions that followed.”
“To not let HAE hold me back from anything is what I took away.”
Youngsters Track Participant
The power of stories
You might remember Faye Marshall from earlier editions of Global Perspectives. This time, our resident word wizard joined Nevena in Manila. She helped the young people tell their stories and express themselves through the art of words. A series of workshops and discussions helped young people to express their thoughts and feelings. Nevena had high praise for Faye, calling her “A rockstar and a magician. She was outstanding, and we hope to collaborate again.”
Young people’s HAE questions answered
Dr Hilary Longhurst, a member of the Scientific Committee of the 2025 HAEi Regional Conference APAC, took time out of the Scientific Track to answer the burning questions of young people. As in previous meetings, this is always a popular part of the agenda. Young people from the Asia-Pacific region asked about the future, being an adult, relationships, and starting a family, and the present and future of treatment for children with HAE.
“The young people were grateful to Dr Hilary Longhurst for her time and thoughtful answers. She created a safe space for the youngsters.”
Conclusions
The feedback received tells us the track was a real success with these APAC Youngsters. The YAG’s contributions in the planning stages ensured it met young people’s needs. With each Youngsters Track, we open minds to the possibilities of working together as a community and the importance of advocacy. The young people who attended produced many images, videos, and postcards, and we will use them throughout the HAEi Youngsters’ Community in the coming months. Nevena also heard from some of the attending youngsters that they wanted to get more involved in HAEi and advocacy, so watch this space!