1. Frambu – Sterk på sjelden kunnskap S trong on rare knowledge Ingerid Ringheim Frambu – Resource Centre for Rare Disorders

2. 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

3. 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

4. Frambu Resource Centre for Rare Disorders Frambu is located 17 kilometers south of Oslo

5. Frambu offers assistance to about 100 different diagnosis Frambu is the only centre with a hotel facility

6. Professional staff 70 beds 20 families Kindergarten School

7. What do we do at Frambu? Residential courses Communication and Documentation Outreach activities in users local community Research projects Summer camps

8. What they do not offer to their clients No medical treatment No individual follow up or therapy

9. 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

10. What can they learn from their patients Experiences about living with a rare disease. How to achieve the best possible quality of life

11. Communication Courses Seminars Conferences Video meetings E – learning Web site Facebook Twitter Issuu You tube

12. Domiciliary visits

13. Guidance to families, clients, relatives people from the health service Guidance meetings Contribute to courses conferences seminars

14. Summercamp = Empowerment

15. 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

16. And a Directory which provides brief information about the condition, including the incidence, causes, characteristics and follow-up.

17. 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.

18. Welcome to Norway – thank you!