frambu – sterk på sjelden kunnskap s trong on rare knowledge ingerid ringheim frambu – resource...
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Frambu – Sterk på sjelden kunnskap
Strong on rare knowledge
Ingerid Ringheim
Frambu – Resource Centre for Rare Disorders
A medical disorder is considered rare when there are less than 100 known cases per million inhabitants. In Norway this corresponds to fewer than 500 known cases
Some 30 000 people in Norway suffer from rare hereditary or congenital disorders
The Norwegian Model
10 Resource Centres
Money for the centres are funded via the state budget
A national service
320 Diagnosis
Provide services for 16000 persons
Frambu Resource Centre for Rare Disorders
• Frambu is located 17 kilometers south of Oslo
Frambu offers assistance to about 100 different diagnosis
Frambu is the only centre with a hotel facility
Professional staff
70 beds
20 families
Kindergarten
School
What do we do at Frambu?
Residential courses
Communication and Documentation
Outreach activities in users local community
Research projects
Summer camps
What they do not offer to their clients
No medical
treatment
No individual
follow up
or therapy
But they offer
Some medical examination
Some advices
A lot of counselling
Advice about modification of activities and environment
Sharing of experiences between patients and professionals
What can they learn from their patients
Experiences about living with a rare disease.
How to achieve the best possible quality of life
Communication
Courses
Seminars
Conferences
Video meetings
E – learning
Web site
Issuu
You tube
Domiciliary visits
Guidance to families,
clients, relatives
people from the health service
Guidance meetings
Contribute to
coursesconferencesseminars
Summercamp = Empowerment
• See Frambu’s website: frambu.no
• Under ’Publications’ you can see a large diagnostic booklet for HSP.
• It is an inter-disciplinary presentation of HSP aimed at people with a diagnosis and their carers and service providers
• And a Directory which provides brief information about the condition, including the incidence, causes, characteristics and follow-up.
• And there are videoes about the diagnosis. There are 4 about HSP, but we speak Norwegian. But you can see some training..
• You can browse, download, and order all information material from Frambu.
All the information materials are free. Select the appropriate category in the menu to the right and click the arrow to download the magnifying glass to read or order button to receive materials by mail. Frambu pay any postage.
Welcome to Norway – thank you!