The information in this article is sourced from this leaflet from Frambu and this publication from Eurordis. You can also visit Frambu’s website by clicking here.
Frambu is a national centre for rare disorders and disabilities in Norway, and is considered to be one of the best centres in Europe. Originally founded in 1955, Frambu works toward improving the quality of life for people and families affected by rare disorders. In Norway, conditions are considered rare if they affect one person in 10,000 or fewer. Frambu’s work includes around one hundred rare disorders, including Angelman syndrome, Batten syndrome, Neurofibromatosis, mitochondrial disorders, muscle disorders, mucopolysaccharide disorders, and many others.
Frambu’s Approach
Frambu’s work is broad, and includes medical, social, research, and educational aspects. The organisation works with patients and families at any point throughout their lives, and their approach focuses on the family as a whole. Frambu emphasises flexibility in their approach, and values input from parent groups and other organisations.
Frambu’s Activities
One of the areas of Frambu’s work is in-house educational courses that last between one to twelve days. These are designed to bring together families, individuals, caretakers, and healthcare professionals to take part in activities such as lectures and discussions. Frambu also hosts summer camps designed for children and young people who have rare disorders, and organises outreach activities to engage and involve the local community.
In addition to this, Frambu also works to promote information about living with rare diagnoses, in the form of books, booklets, videos, and more. The organisation supports research projects, and promotes collaboration relating to rare disorders.
Frambu’s History
Originally, Frambu was intended to be a centre dedicated to more common chronic conditions, such as asthma and allergies. In 1975 the centre arranged their first course on a rare disorders, haemophilia. Throughout the 1980s, Frambu worked on improving rare diagnoses, and, in 1996, the centre officially became a resource centre for rare disorders. It is now a private trust that receives considerable support from the Norwegian government.
