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. You can read about some of the disorders TRS offer services to here:

TRS' activities

TRS' activities encompass three main categories:

  1. Knowledge dissemination and counselling

  2. Cooperation and involvement

  3. Research

1. Knowledge dissemination and counselling

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

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 about the disorders 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.

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

How can you contact TRS?

Telefone: 66 96 90 00 , telphone hours: monday-friday 10-12 and 13-14.

e-mail: trs@sunnaas.no (do not send health information by e-mail).

Post: TRS kompetansesenter, Sunnaas sykehus, Bjørnemyrveien 11, 1453 Bjørnemyr.

2. Cooperation and involvement

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.

User organizations for TRS diagnoses

Norwegian associaton for arthrogryposis multiplex congenita (AMC foreningen)

Norwegian association for Fibrous dysplasia / McCune Albright syndrome (Norsk forening for fibrøs dysplasi/ McCune Albrights syndrom)

Norwegian association for Marfan syndrome and Marfanlike disorders (Marfanfroeningen)

Norwegian association for congenital limb deficiencies (Dysmeliforeningen)

Norwegian association for Ehlers-Danlos syndrome (EDS foreningen)

Norwegian association for osteogenesis imperfecta (OI foreningen)

Nowegian association for short stature - skeletal dyspalsia (Norsk interesseforening for kortvokste, NIK)

Norwegian association for multiple osteochondroma (Norsk MO forening)

 Norwegian association for spina bifida and hydrocephalus (Ryggmargsbrokk og hydrocephalusforeningen)

3. Research

There is a continuous need to develop knowledge about rare disorders. TRS is focused on bringing users and researchers together to further new competence. Our research is influenced by questions from service users and their peers, clinicians, other relevant services (e.g. the school/educational systems, the Norwegian labor and welfare administration (NAV), etc), and systematically includes non-governmental organizations (NGOs).  

Norwegian National Advisory Unit on Rare Disorders (NKSD)

TRS is one of nine national resource centers on rare disorders in Norway, cordinated by NKSD. NKSD 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.

An alphabetical listing of all disorders is available on this website Rare Disorders, as well as which center is responsible for each one, or call 800 41 710.



 

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