He has made the rare visible and enabled their empowerment
Many gathered to honor Anders Olauson and his recent appointment as an honorary Doctor of Medicine at Sahlgrenska Academy. He is a passionate advocate who has spent most of his life fighting for a dignified life for people with rare conditions and their families – not only in words but through action, both in Sweden and abroad.
Looking ahead – the title of Anders Olauson's own speech – perfectly captured which approach he has taken. He has consistently aimed to look to the future, improve, develop, and instill hope. When it was his turn to speak, Anders set aside his prepared notes, speaking straight from the heart, visibly moved by the personal stories, struggles, innovation, and courage shared by previous speakers.
"When I started working on these issues over 40 years ago, I was angry and frustrated, lacking both the tools and knowledge. But I knew that the lives of people with rare conditions had to improve – and dramatically. Standing here today, I feel speechless. So many of us are finally coming together in this shared fight. I am grateful you are here today, sharing your experiences. But we cannot stop now; quite the opposite."
Anders emphasized that in just a decade, over 50 percent of healthcare is expected to take place in people's homes.
"But how can this happen if we are not planning for it, not addressing real needs and exploring possibilities? We must continue collaborating, take a holistic approach, and empower individuals to increase their autonomy, participation, independence, and their ability to shape their own lives."
He continued looking to the future, reflecting on how he may be part of this journey from a new perspective. The applause was warm and lasting.
Looking forward is key to success
Back to the program, other speakers gathered to honor Anders Olauson’s appointment as Honorary Doctor of Medicine. The theme of the symposium was Rare health conditions in children and young adults – and how society needs to support their life journey.
A large group of colleagues, experts, and friends gathered at the Wallenberg Conference Center. Jovanna Dahlgren, professor of pediatric endocrinology at the University of Gothenburg, welcomed the audience and served as the day's moderator. Magnus Simrén, professor of medical gastroenterology and Vice Dean of Sahlgrenska Academy, gave a brief opening speech, and everything was conducted in English.
Magic of community engagement
John Bridges, professor of biomedical informatics and surgery at Ohio State University, reflected on his work over the past 20 years and how his meeting with Anders Olauson greatly impacted it.
"It was during a visit to Ågrenska that I met Anders and saw the incredible work he had built with a warm and multidisciplinary team. I heard some of the life stories and realized – had a revelation, really – that more needed to be done for people with rare conditions, and urgently."
Since then, John has worked to bridge science with the human side of healthcare, finding ways to measure the immeasurable and provide evidence on what people with rare conditions need to maintain a dignified life. His presentation had three parts: The problem with health technology assessment, The rise of patient-centered outcomes research, and finally, The magic of community engagement.
Legal frameworks for patient pathways
Ulf Petrusson, professor of law at the University of Gothenburg, spoke next. He also has a long-standing relationship with Anders. Ulf's contribution focused on the legal side, ensuring the system works to provide equal healthcare and living conditions for all, especially those with rare conditions. He discussed the paradigm shift brought about by the 2013 Patient Empowerment Inquiry, which strengthened patients’ position and influence within healthcare and, by extension, their own lives. He also emphasized the crucial role of patient organizations in implementing the law.
The Ågrenska Model – supporting over 5,000 families
Zozan Sewger Kvist, CEO of Ågrenska Benefit Corporation, shared the foundation's history, growth, and the Ågrenska model.
"For over 30 years, Ågrenska has worked to gather knowledge, share, and spread our expertise on rare health conditions and other disabilities. We have met over 5,000 families, thousands of children, and professionals. We have also established an Ågrenska Center in Estonia, which opened in 2007, and have Queen Silvia as our patron."
Ågrenska has built a well-functioning structure for both its family weeks and other activities over the years.
"Our care model can be summarized in three key points: One: We always focus on the individual and their abilities, not their challenges. Two: We work with the whole family and the entire life course. Three: We operate in a cross-sector model, sharing knowledge with schools, inviting doctors and other professionals to participate in our family programs, and sharing our documentation and insights generously."
Families, children, and siblings often tell Ågrenska that there was life before Ågrenska – and a better life after.
”The Gothenburg initiative” – Anders' initiative
Kate Abrahamsson, professor of pediatric surgery at the University of Gothenburg and head of Queen Silvia’s Children’s Hospital, highlighted Anders’ exceptional qualities.
"You have a unique way of getting people to open their hearts and do good. You made me see the reality that people with rare conditions live in. It hit me deeply, and I am still incredibly grateful."
She described how Anders’ career took an international leap, partly thanks to Ingela Thalén. Soon, he inspired decision-makers in other countries to recognize that, while rare, these conditions affect a substantial number of people across all cultures and continents. He has also inspired individuals and organizations to adopt Ågrenska's concept, showing them that they, too, can create similar sanctuaries.
Living between patient journey and pathway
Rebecca Tvedt Skarberg from the Norwegian National Advisory Unit on Rare Disorders at Oslo University Hospital, and a patient representative for EURORDIS and ERN BOND, has the rare diagnosis Osteogenesis Imperfecta (OI). She was born with several fractures and has suffered many more since. She shared her own life journey, her struggle to survive at home, and how her path crossed with Anders.
Her takeaway message was: Tools for decision-making about a person’s life and pathways are never a goal in themselves – they must translate into action. Patient partnerships mean daring to search for answers together.
"I remember receiving a note from you, Anders, many years ago after one of your talks. It said, 'Educate me.' Well, Anders, I want to follow up on that line – please, let us keep educating each other!"
The morning symposium concluded with a toast, sparkling wine, and snacks to celebrate Anders Olauson and his contributions.
Text: Susanne Lj Westergren