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).

Nordic Skeletal Dysplasia Association


Aim 

Cooperation across the Nordic countries to provide adequate diagnostics, follow-up and treatment for people with rare skeletal dysplasias.

Me​mbers

Health care professionals working with skeletal dysplasias in the Nordic Countries.

Contact persons at TRS Resource Centre for Rare Disorders, Norway:


​A​​ctivities

​​​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. 

Picture of the 9th workshop 2024 teaser

More information w​ill 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 p​erspectives 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

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).

Picture of Ravi Saviarayan beeing interviewed

Read the​​​​​ news story and see the TV interview (in Norwegian)

​2. Nordic Skeleta​l 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





What is TRS?

TRS is a national resource center for rare, congenital skeletal- and connective tissue disorders, Spina Bifida and limb deficiency. The users of the center are people affected by the disorders, their families, health personnel and other professionals working with this group. TRS is a part of the Norwegian National Resource Services on Rare Disorders (NKSD) and is located at Sunnaas Hospital in Nesodden, near Oslo, Norway.
Learn more about TRS
Bilde fra Sunnaas, utendørs
Sist oppdatert 11.05.2023