Nordic network for people living with
rare diseases.

Nordic network for people
living with rare diseases.

People sitting and standing in rows for group photo in a conference room.

SBONN was established in 2014 to nurture closer cooperation between the rare disease organizations in the Nordic countries.

SBONN aims to strengthen the exchange of experiences and ideas as well as knowledge development, learning and understanding between the rare disease organizations in the Nordics.

SBONN represents national organizations with more than 49,000 members in five countries. It aims to:

  • work for increased Nordic cooperation in care, treatment and research for persons with a rare disease or a disability
  • work as a joint influence in Nordic conferences and as a value adding voice
  • influence structures and regulations on a Nordic level
  • actively collaborate with stakeholder groups in care and research to contribute to innovation and improvement of lifes of those living with a rare disease
  • develop and maintain a joint agenda with a Nordic perspective in European cooperation and context
  • act as a contact point on Nordic level matters

For more information on
member countries:

Contact information

You can contact SBONN by getting in touch with one of the member countries. Please find the information below.

Each year one of the countries acts as the secretary for SBONN. For years 2023 and 2024 the secretary is Finland. 


Rare Diseases Denmark / Sjaeldne Diagnoser


The Finnish Network for Rare Diseases / Harvinaiset-verkosto

HARSO – The Finnish Alliance of Rare Diseases and Disabilities Organizations


Unique Children in Iceland / Einstok börn


The Norwegian Federation of Organisations of Disabled People (FFO)


Rare diseases Sweden / Sällsynta Diagnoser