News from Nordics
From Regional Patient Advocate Jørn Schultz-Boysen
2024 Highlights
The 2024 HAEi Global Leadership Workshop and ACARE Global Angioedema Forum 2024 brought together leadership from Member Organizations (MO), healthcare professionals, and physicians, including participants from my region countries of Finland, Sweden, Norway, and Denmark. The event offered opportunities to explore the latest advancements in angioedema care, learn about advocacy tools and resources, and strengthen efforts within their countries. It also (re-)created connections among attendees, highlighting the power and impact of a united, collaborative community.
Meeting patients locally in Finland and Denmark through MOs was another key highlight. These gatherings provided a platform for participants to share experiences, gain insights into new treatment options, and explore HAEi resources. Such meetings emphasized the value of local engagement and strengthened both advocacy efforts and a sense of community, bringing people together around shared challenges and goals.
An exciting milestone this year was the launch of SumsUp, a digital tool created by HAE Scandinavia and an HAEi LEAP 23 student. Initially designed for youth, SumsUp has proven useful for all age groups. The app offers HAE advice and reassures users they are not alone. Currently, SumsUp is being upgraded into a native iOS and Android app, increasing its accessibility and impact across Scandinavia.
Hopes for 2025
In 2025, my goal as an RPA is to improve the quality of life for individuals with HAE and their families while ensuring continued access to modern treatments. I am eager to witness the advocacy and empathy of HAE communities and look forward to hae day :-), a key opportunity to raise awareness. Another highlight will be the Regional Conferences uniting patients, caregivers, healthcare professionals, and pharma representatives. Additionally, the LEAP25 program will welcome a new cohort of young advocates, including Students from my region. For the Nordics, I aspire to connect with more patients and caregivers, especially in underserved areas.