About Frambu

What is Frambu?

• Frambu is a national resource centre for people with rare disorders and disabilities catering for approximately 100 different rare disorders.
• Frambu provides services, funded by the government that are supplementary to the normal treatment and care to which everyone is entitled.
• Frambu is a place for families and professionals to meet.
• Frambu’s services span the entire life cycle from childhood to old age.

Vision: To provide leading-edge expertise, knowledge and services in the field of rare disorders.

Objective: Frambu aims to collate, develop and impart knowledge about rare disorders and disabilities on behalf of individuals both with and without a rare disorder, their close/ immediate family and the professionals who work with them, so that children, adolescents and adults with impaired abilities can live a life in harmony with their condition, aspirations and needs.

What do we do at Frambu?
Frambu works with people who have specific rare disorders as well as with their families/carers and with healthcare professionals. The centre has organised its work into the following core areas:

Residential courses
Courses at Frambu are organised on the basis of specific disorders, groups of disorders and topics that may be relevant to many disorders. Courses are planned in close collaboration with user organisations. Courses are geared towards people affected by a disorder, their close/immediate family and healthcare professionals. While attending a course, people stay at Frambu and come together for lectures, group discussions, consultations and joint activities. Children can attend day care and school on site at Frambu, and are supported by play therapists. Courses offered at Frambu are free of charge for users and their close/immediate family.

Summer Camps
Each summer, Frambu arranges four camps for groups of 40-50 children and adolescents with rare disabilities, without accompanying parents. These extremely popular camps last for one to two weeks and enable youngsters to meet others in the same situation as themselves, to share experiences and to build a network of friends and acquaintances. Frambu strives to enable participants to challenge their own boundaries and to discover new possibilities in themselves.

Creating local networks
Frambu helps users and the professionals who work with them to develop supportive networks in their own communities. Collaboration with local health services and staff ensures that people with a rare disorder and their families receive treatment, care and services appropriate to their needs within their local community. Staff from Frambu visit people in their home environment, pass on information and hold guidance meetings, as well as making contributions to courses, conferences and seminars. Requests for this service should be made directly to Frambu. This service is provided free of charge.

Development
Development is at the heart of Frambu’s activities. The work involves surveying, collating and organising the knowledge base around rare disorders, gleaning material both from practical experience and from Frambu’s day-to-day operations. The aim of developmental work at Frambu is threefold: to deepen our knowledge both of the specific disorders we work with and of ways of coping with a rare disorder and to contribute to the development of high-level expertise in the field of rare disabilities. To this end, Frambu collaborates with educational institutions and centres of expertise in Norway and abroad.

Communication and Documentation
People with a rare disorder, their immediate/ close family and professionals may contact Frambu by e-mail or telephone for accessible, relevant and professionally-reviewed information about the rare disorders for which Frambu caters. Frambu also produces information materials about individual disorders, groups of disorders and topics relevant to many disorders. These resources may be ordered via our website or by direct request to Frambu. The staff of the professional library at Frambu can also provide guidance on relevant literature and helpful websites. Frambu’s information materials are free of charge for people with a diagnosed disorder and their immediate family.

This digital story gives a short presentation of Frambu in English: (03:25)