Workshop 5 - "The Norwegian Model"
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Workshop 5 - Brainstorming & Policy Development session: Social Aspects "The Norwegian Model" Lisen Mohr, Frambu, Norway
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Workshop 5 - "The Norwegian Model"
- 1. The Norwegian Model Lisen J.Mohr Frambu
- 2. Norway
- 9. Frambu offer assistance to about 100 different diagnosis. Frambu is the only one with a hotel accommodation
- 12. Friends
- 16. Different ways of telling their story
- 17. Information to the local community
- 19. They are a part of the society
- 21. Open line
- 28. Thank you!
Notas do Editor
- I know that the European Union defines it as less than 5 per 10,000 I have brought with me some information folders translated to English which you can get from me. Rarelink is a link collection for rare diseases. This site is a useful source for highly qualified information aimed at both patients and experts.
- Read some of the results from my papers
- When it comes to PWS most babies get diagnosed at the hospital very soon after birth. I Norway we also are very lucky because we have a very strong and active PWS Association. The PWS Association and Frambu have close collaboration. The PWS-association is a very good model which some of the other rare diagnostics groups in Norway can learn from. Networking is extremely important for rare diseases.
- When it comes to PWS most babies get diagnosed at the hospital very soon after birth. I Norway we also are very lucky because we have a very strong and active PWS Association. The PWS Association and Frambu have close collaboration. The PWS-association is a very good model which some of the other rare diagnostics groups in Norway can learn from. Networking is extremely important for rare diseases.