TRS National Resource Centre for Rare Disorders

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.

Research and counseling
There is a continuous need to develop knowledge about rare disorders. TRS is focused on bringing users and researchers together to further new competence. Counseling will reveal where new knowledge is needed. Studies and projects are carried out to benefit the individual user.

The center offer life-long services to all age groups, such as guidance and counseling on medical, psychological, social and educational issues.
The users of the services must be diagnosed to be eligible to register at the center.

Spreading knowledge
Knowledge is not useful before it is available to the end user. No matter if that is parents whose child has recently been diagnosed, a primary care physician, a teacher, a school nurse, a hospital specialist or an employee at the local welfare administration.

TRS can offer:

  • Comprehensive information on our website
  • Print brochures on the disorders we cover
  • Answer questions via phone
  • Arrange courses at our facilities for user groups
  • Local visits to assist with guidance for daily accommodations
  • Write articles and present information at conferences nationally and internationally
  • Establish a network of professionals and institutions
  • Produce digital learning courses about the disorders

The main purpose is to make sure the knowledge attained about a disorder will be of use.

Cooperation
A good dialogue between users of TRS and the people who work here is important to provide a beneficial set of services. The center cooperates with relevant interest groups and meets with regular intervals.

TRS also work closely with professionals, both on behalf of the individual user but also to secure good services in the welfare system.

Through a digital secure system, users can communicate with TRS and get access to their own patient records.

Norwegian National Advisory Unit on Rare Disorders (NKSD)
TRS is a part of NKDS which coordinates the national resource centers on rare disorders in Norway. NKDS is a place to contact regarding disorders that are not handled by one of the nine centers, where the main services and research is handled.

You can read more about the different centers here: Rare Disorders or call 800 41 710.

An alphabetical listing of all disorders is available on this website, as well as which center is responsible for each one.

You can read more about some of the disorders here: Disorders