Nordics, Germany, Austria, Switzerland, and Israel
Jørn Schultz-Boysen serves as HAEi’s Executive Vice President Global Operations and Chief Compliance Officer and is responsible for day-to-day operational, managerial, and financial matters. Jørn joined the Board in 2012 and has also served as HAEi’s Executive Project Manager. He is a co-founder of HAE Scandinavia where he serves as the Vice President. Jørn is also the Regional Patient Advocate for the Nordics, Germany, Austria, Switzerland, and Israel. Before joining HAEi, he held executive-level positions in a variety of companies with global operations.
Contact Jørn by email: gro.ieah@nesyob-ztluhcs.j
2023 Highlights and Hopes for 2024
In the December issue of Global Perspectives, each of our Regional Patient Advocates (RPAs) has selected a few of the most important moments and successes from the past year, as well as their hopes for 2024 for their region.
Here you have the highlights from Jørn – and his hopes for 2024:
To aim for an even higher quality of life for individuals with HAE and their families, while ensuring ongoing access to and reimbursement for modern HAE medications. I look forward to witnessing the remarkable HAE communities in various countries, led with notable advocacy and empathy for those affected by HAE and their families. Lastly, I’m excited about many 2024 HAEi activities: hae day :-), the 2024 HAEi Global Leadership Workshop and HAEi LEAP, to name only a few, and to see how countries in my region will make the most of these opportunities.
– Jørn Schultz-Boysen
News from Global Perspectives 2023
Published in Global Perspectives, October 2023
From Regional Patient Advocate Jørn Schultz-Boysen
Over the past months, the main focus has been the 2023 HAEi Regional Conference EMEA in Munich, Germany, 1-3 September 2023. You can read a lot more about the conference and the impact it has made amongst patients, caregivers, healthcare professionals, and representatives from the pharmaceutical companies in this edition of Global Perspectives.
Participants from all over the region were in Munich – Finland, Norway, Sweden, Denmark, Israel, Austria, Switzerland, and Germany – and in all three tracks – patient/caregivers, youngsters, and the scientific track. All countries had prepared a short presentation and an important message to share with everyone at the conference. These messages were presented and read out in the patient/caregiver track with the statements from all the other countries. This was a powerful moment with all Member Organizations represented.
Apart from the many inspirational presentations at the conference, it was great to feel the connection between participants, and the networking during breaks was massive. It was time to meet new and “old” friends and catch up with the latest from the pharma companies supporting the conference. At the same time, seeing so many youngsters participate in their particular track was wonderful. It’s great to see so many young people who are the future for HAE.
At the conference, it was a pleasure to announce that the Pharmaco and Socioeconomic study has now been launched in Germany and Switzerland for all patients and caregivers to respond to. It will soon also be open in Austria. We hope that as many of you as possible will take your time to answer the survey. The HAE organizations in Germany and Switzerland will contact you about this (and soon Austria as well) – and those in Munich received a one-pager describing the study.
Our friends from Switzerland have produced an excellent short film explaining HAE in simple terms. It is explained in non-medical language and covers what triggers the disease, how the processes in the body work, and what can be done about it. The movie is spoken in Swiss-German and is subtitled in English, German, French, and Italian – see the film here.
In Scandinavia, a youngster completed the HAEi LEAP 2023 program, and the project being worked on together with the local Member Organization is developing an app for patients and caregivers. The app will sum up the content provided to the community in the Scandinavian countries and focus on not only the illness but also the tools available to all to make daily life with HAE easier. It will be available in the languages spoken in the Nordic countries, which offers great potential for other Member Organizations to use the app’s content.
Also, I am very happy to say there is interest in HAEi hosted websites from two countries in the region – Finland and Austria. Hopefully, we will soon get started on these two websites.
As always, a shout-out to the two apps offered by HAEi. HAE TrackR, the app that enables people with HAE to take control of their HAE by registering acute and prophylactic treatments, and HAE Companion, the pocket-size travel partner app. Both are highly recommended and available in Apple’s App Store and Google Play.
HAE TrackR is a great tool now available in 36 languages – several spoken in ”my” region (Danish, Finnish, French, German, Norwegian, and Swedish). The HAE TrackR app is easy to use and it will help the patient and physician in their dialogue on current and future treatment options.
The HAE Companion app deserves another mention. This app will help you find local HAE treatment centers, directions to find them, and Emergency Cards available in more than 80 countries.
But nothing beats meeting in person. A big thank you to all who traveled to Munich to participate in the 2023 HAEi Regional Conference EMEA. It was wonderful to meet you all and to experience this special conference with all of you. I can’t wait to see you next time again!
Published in Global Perspectives, June 2023
The HAEi team works hard to provide our community with programs, services, and activities that help member organizations achieve their advocacy goals. We now have a global advocacy network of member organizations in 96 countries and expect that number to grow significantly in the coming years. Recognizing the need to keep pace with rapidly evolving opportunities and challenges facing people with HAE, HAEi’s Board of Directors approved organizational changes with an eye toward the future. These changes will be implemented on 1 July 2023.
Tony Castaldo, who has led HAEi since the organization’s inception in 2004, will continue serving as Chief Executive Officer and has also been appointed Chairman of the Board. He will continue leading the entire HAEi enterprise and work with the new executive team to establish HAEi’s long- and short-term strategic and operational direction and plans.
Henrik Balle Boysen has been appointed as HAEi’s President. Currently serving as Executive Vice President and Chief Operating Officer, Henrik has been the driving force behind our remarkable growth and the architect of the technology-based platforms and apps. His efforts are the reason that HAEi has the distinction of being considered one of the world’s leading rare disease global umbrella organizations. As President, Henrik will be responsible for strategic and operational planning and guiding the leadership team’s implementation of HAEi’s programs, services, and activities. In addition, Henrik has been elected to the Board of Directors.
Fiona Wardman, our Chief Regional Patient Advocate (CRPA) and RPA for Asia Pacific, moves up to become Executive Vice President Global Advocacy and Chief Diversity Officer. In her capacity as CRPA, Fiona has provided effective leadership that helped our highly talented Regional Patient Advocates achieve the goals set out for the various HAEi regions. She has led a very successful effort to establish new member organizations in the Asia Pacific Region. Her new role expands her responsibilities to include leading and overseeing all of HAEi’s advocacy activities.
Jørn Schultz-Boysen has been selected to serve as Executive Vice President Global Operations and Chief Compliance Officer. Jørn currently serves as HAEi’s Executive Project Manager and RPA for Nordics, Germany, Austria, Switzerland, and Israel. He has a deep business background, having served in executive positions at various companies with international operations. Jørn will take over the day-to-day operational, managerial, and financial responsibilities formerly handled by Henrik. He will also continue serving as an RPA.
Michal Rutkowski has been appointed as Director, Regional Patient Advocate Program. Michal moves up from his position as RPA for Central Eastern Europe, Benelux, and The Middle East. His many successes include helping existing member organizations expand their capabilities and nurturing the formation of many patient groups throughout the huge region that he serves. He will continue as the RPA for the region he currently handles.
