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:
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 next workshop will take place in Copenhagen Denmark 02.- 03. of May 2024.
More information will come on the 9th workshop website
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
Some of the workshop participants
The Norwegian TV channel TV2 made an interview with Ravi Saviarayan and Sven Fredwall about achondroplasia and Vosorotide at the 8th Nordic Skeletal Dysplasia Workshop in Oslo. The interview is now published (in Norwegian).
Read the news story and see the TV interview (in Norwegian)
2. Nordic Skeletal Dysplasia CouncilThis 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