Nordisk fagnettverk for skjelettdysplasi
Nordic Skeletal Dysplasia Association
Nordic Skeletal Dysplasia Association is an association for Medical professionals working with rare skeletal dysplasias in the Nordic countries (Denmark, Finland, Norway and Sweden).
Aim
Cooperation across the Nordic countries to provide adequate diagnostics, follow-up and treatment for people with rare skeletal dysplasias.
Members
Health care professionals working with skeletal dysplasias in the Nordic Countries.
Contact persons at TRS Resource Centre for Rare Disorders, Norway:
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Svein O.Fredwall: svfred@sunnaas.no
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Ariane Kwiet: arikwi@sunnaas.no
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Lena Lande Wekre: LENALW@sunnaas.no
Activities
1. Nordic Skeletal Dysplasia Workshop meetings
Annual meetings organized by one of the member countries.
The 9th Nordic Skeletal Dysplasia Workshop, may 2024
The workshop took place in Copenhagen Denmark 02.- 03. of May 2024.
See pictures and information on the workshop webpage
The 8th Nordic Skeletal Dysplasia Workshop, 9 - 10 March 2023, in Oslo
The workshop was held in Oslo and gathered almost 100 participants from the Nordic countries, Europe, Japan, US and Australia. Representatives from Little People of Norway also attended the two day workshop.
The attendees got a very varied program including historic perspectives on skeletal dysplasia, basic research, radiology, genetics, classifications, case-presentations, pain, nutrition and rehabilitation.
Here you can find the workshop program
2. Nordic Skeletal Dysplasia Council
This council aims at promoting and coordinating clinical trials for patients with rare skeletal dysplasia in the Nordic Countries to advance medical science and improve patient outcomes.
Read more about the Nordic Skeletal Dysplasia Council in the Council webpage