Den Sällsynt viktiga elevhälsan

Den sällsynt viktiga elevhälsan (Rare Diseases in School Health Services) is a much-anticipated project initiated by, among others, the Youth Group at Rare Diseases Sweden. The project began in July 2025, is funded by Allmänna Arvsfonden and will run for three years.

Many students in Sweden live with rare health conditions – but awareness and understanding of their needs within school health services remain limited. We want to change that.

 

Project goals

To develop a method and supporting materials for reaching school health services in all regions of Sweden. The aim is to empower children and young people living with rare health conditions and give school health services better tools to understand, respond to and support these students in their everyday school lives. In doing so, the project also aims to contribute to improved mental and social well-being.

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What will we do as part of the project?

Through Den sällsynt viktiga elevhälsans service, Rare Diseases Sweden aims to draw on the voices of young people to strengthen knowledge and understanding of rare diseases within school health services.

As part of the project, young people with personal experience of rare diseases will be trained to develop educational materials and share their insights with school health services – through lectures, materials and dialogue across Sweden.

Throughout the project, we will also maintain close dialogue with professionals from several different disciplines working within school health services, as well as representatives of professional associations. This will help ensure that the materials we develop reflect the needs and working methods used in practice.

Rare Diseases Sweden and our young ambassadors will visit school health teams across Sweden to present the materials. All materials developed as part of the project will be freely available from Rare Diseases Sweden.

Together, we can strengthen school health services – with greater knowledge, better understanding and improved support for children and young people living with rare health conditions!

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Who is the project for?

The primary focus is students aged 13–19 in lower and upper secondary school who are living with a rare health condition.

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What will happen during Year 1?

• Raise awareness of and promote the project.

• Invite young people aged 13–25 who are living with a rare health condition, as well as parents and guardians, to two workshops during spring 2026. Together, we will develop the method and materials for school health services.

• Gather knowledge and collaborate with school health teams.

 

What will happen during Year 2?

• Invite the target group – young people aged 13–25 living with a rare health condition – and parents and guardians to a follow-up workshop.

• Identify two pilot schools in each healthcare region in collaboration with Rare Diseases Sweden’s member organisations. Members of the project’s target group will have the opportunity to practise presenting the materials at these pilot schools and, where necessary, help develop them further.

• Work with the target group to develop and record materials for school nurse training in collaboration with the University of Skövde.

• Together with our young ambassadors, attend and participate in relevant professional conferences and congresses.

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What will happen during Year 3?

• Our trained young rare disease ambassadors will visit school health teams in different healthcare regions, supported by the Rare Diseases Sweden project team.

• Distribute the physical and digital materials developed during the project to school health teams across Sweden.

• Together with our young ambassadors, attend and participate in relevant professional conferences and congresses.

• Hold a final gathering in Stockholm to mark the conclusion of the project.
   

For those working in school health services

Would you and your colleagues in the school health team like to learn more about rare diseases and access the materials being developed as part of the project? We would be happy to visit your school and tell you more about rare diseases.

Please feel free to contact us!

Email Evelina: evelina.rosen@sallsyntadiagnoser.se
 

About Rare Diseases Sweden

Being rare is not uncommon – an estimated 500,000 people in Sweden live with a rare health condition. Rare Diseases Sweden is an organisation working to ensure that everyone living with a rare health condition in Sweden, as well as their loved ones, has access to the best possible care, support and treatment.

Together with our more than 17,000 members, we represent people living with a wide range of rare health conditions. Through our advocacy work, we help improve care, support and treatment for people whose needs can otherwise be difficult to see and hear.
 

Contact us

Please feel free to contact us if you would like to learn more or are interested in taking part in the project: