Rare Disease Day in Norway
Rare Disease Day has been celebrated in Norway since 2007 when the following three organisations joined forces: Nasjonal kompetansetjeneste for sjeldne diagnoser (Norwegian Advisory Unit on Rare Diseases), Funksjonshemmedes fellesorganisasjon (The Norwegian Federation of Organisations of Disabled People) and Unge Funksjonshemmede (the he Norwegian Association of Youth with Disabilities).
Each year they raise public awareness of Rare Disease Day by hosting a conference for persons living with a rare disease, their families and health professionals.They also promote the event through gaining press coverage, securing interviews on national television and by running a social media campaign.
The Sjeldendagen conference is usually fully booked with a livestream available. Past contributors include the State Secretary from the Ministry of Health and Care as well as speakers from notable centres working with rare diseases. The conference has become a household name for those working in this area and is an important meeting point for people living with a rare disease.
Do you know of any events not listed here? Or would you like to get involved? Email us at [email protected].