Den Sällsynt viktiga elevhälsan
Together for more knowledge, greater understanding and better support for rare children and young people!
Many children and young people in Sweden live with a rare health condition. Yet knowledge about these conditions, and how they can affect everyday life at school, remains limited within school health services.
We want to change that.
Den sällsynt viktiga elevhälsan (Rare Diseases in School Health Services) is a three-year project run by Rare Diseases Sweden and funded by Allmänna Arvsfonden. The project began in July 2025 and was initiated in part by Rare Diseases Sweden’s Youth Group.
Through the project, we work with young people who live with rare health conditions to develop knowledge, materials and ways of working that help school health services understand, respond to and support students with rare health conditions.
What we are working on right now:
As part of the project, we are making an educational film for school health services with documentary filmmaker Helene Näslund (Svenska Berättarhuset).
The film features interviews with three young people living with different rare health conditions.
Project goals
The aim is to develop educational materials that school health services across Sweden can use, and to support children and young people living with rare health conditions in their everyday school lives.
By increasing knowledge and understanding, we want to help school health services:
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understand how a rare health condition can affect a student’s school day
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recognise when a student needs support
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respond to students in a way that makes them feel safe and respected
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help students take part in decisions that affect them and support their mental and social well-being
Young people’s experiences at the heart of the project
Young people living with rare health conditions play a central role in developing the materials. During the project, young people will be trained as rare disease youth ambassadors. They will share their experiences and perspectives through training sessions, talks and conferences, and meet school health teams across Sweden.
Together, we can strengthen school health services – with more knowledge, greater understanding and better support for children and young people living with rare health conditions!
Working with school health services
To make sure the materials are relevant and useful in practice, we work closely with school health professionals from different disciplines.
Together, we explore what knowledge and support they need to better meet the needs of students living with rare health conditions. The materials are developed with both young people and professionals, with the aim of creating something that works in everyday school life.
What happens in the project?
Year 1 – listen, learn and develop
During the first year of the project, we have:
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shared information about the project
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met and listened to young people living with rare health conditions
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held workshops where young people and parents or guardians shared their experiences and ideas
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welcomed Rare Diseases Sweden’s patron, HRH Crown Princess Victoria, to a youth workshop
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gathered knowledge and insights from school health teams across Sweden
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begun developing educational materials for school health services
Year 2 – train, test and develop
In the second year, we will put what we have learned into practice. We will:
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train rare disease youth ambassadors
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make an educational film
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continue developing and testing the materials with young people and school health professionals
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work with pilot schools across Sweden
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develop materials for school nurse training in collaboration with the University of Skövde
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take part in relevant professional conferences and congresses
The pilot schools will help us test the materials in everyday school settings and improve them based on what students and staff need.
Year 3 – share the results across Sweden
In the third year, we will focus on sharing the materials and approach developed through the project. Our trained youth ambassadors and the Rare Diseases Sweden project team will visit school health teams in different parts of Sweden.
We will also:
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share printed and digital materials with school health teams across Sweden
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continue taking part in relevant conferences and congresses
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bring together and share what we have learned and achieved
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hold a final gathering in Stockholm
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explore how the materials can continue to be used and developed after the project ends
All materials developed through the project will be freely available from Rare Diseases Sweden.
For those working in school health services
Would you and your colleagues like to learn more about rare health conditions and how they can affect students’ everyday lives at school?
We would be happy to visit your school and meet your school health team. Together with our young ambassadors, we can tell you more about the project, share experiences and present the materials we are developing.
Would you like to know more or invite us to your school? Please get in touch!
Project Manager
Evelina Rosén, evelina.rosen@sallsyntadiagnoser.se
Who is the project for?
The project primarily focuses on students aged around 13–19 in lower and upper secondary school who live with a rare health condition. The materials and activities are mainly intended for school health services, where greater knowledge can make a real difference to students’ school lives and well-being.
Contact us
Would you like to learn more about Den sällsynt viktiga elevhälsan, work with us or take part in the project? We would be happy to hear from you.
Contact
Evelina Rosén
Project Manager
evelina.rosen@sallsyntadiagnoser.se
Hanna Gustafsson
Project Coordinator
Hanna Gustafsson and Evelina Rosén.
Photo: Fredrik Hjerling.
Den sällsynt viktiga elevhälsan is a three-year project funded by Allmänna Arvsfonden, launched in 2025.
