TRS is a national resource centre that offers services to seven diagnostic groups for rare congenital disorders. The centre is a part of the Sunnaas Rehabilitation Hospital, and is located just outside Oslo, Norway.

The centre works to increase knowledge about these disorders and offers guidance and counselling on medical, psychological, social and educational issues relating to the seven diagnostic groups.

Individuals must have a relevant diagnosis to be eligible
to register as users. TRS offers life-long services to all age groups.

Knowledge
The staff at TRS enhances its knowledge base through its meetings with users and their families, as well as by attending conferences and staying up-to-date on literature. The centre applies a multidisciplinary approach wherever this is relevant. TRS makes information material on the various diagnostic groups available and has an internal R&D programme.

Participation and Cooperation
Activities at the centre revolve around client participation. Patient organisations play an active role in helping TRS to decide where to focus its efforts. TRS is designed to supplement, not replace, the local health care services. Thus, the centre promotes constructive cooperation between users, staff members and representatives at all levels of the various relevant public services. Above all, the centre seeks to give its users the insights they need to lead autonomous lives.

Services
. Follow-up and counselling by letter or telephone.

. Local involvement through meeting with users, their families and the involved professionals in the home community.

. Regular courses at the centre on a range of
subjects, aimed at a wide array of target groups.
Example: "How to live with a diagnosis". Users and family members or relevant professionals may reside at the centre while attending such courses.

. Opportunity to stay at the centre over time and
consult with its experts. Stays are determined on the
basis of individual needs and problems, in cooperation between users and the professionals at TRS.

. Distribution of information material regarding the
diagnoses dealt with at the centre. Please contact TRS or see www.sunnaas.no/trs.

All services at TRS are free of charge for users.

Direct Contact
Medical referrals are not required for users, family
members or other professionals who wish to make use of the centre.

Diagnostic Groups
Arthrogryposis multiplex congenita (AMC)
This condition comprises two or more stiff joints present at birth. The muscles surrounding the stiff joints are frequently weak. It is present in several different diagnoses.

Limb deficiency
This condition refers to missing bone structure or a defect in the bone structure in the arm(s) and/or the leg(s). It is present in several different diagnoses.

Short stature (Dwarfism)
This condition occurs combined with many rare disorders which have different prognoses and treatment needs. Defects in the bone structure are present in most cases.

Ehlers-Danlos syndrome (EDS)
EDS is a heterogeneous group of heritable connective tissue disorders. This group is characterised by changes in the skin (thin, often with increased elasticity and atypical scars), joint hypermobility and fragile soft tissue throughout the body.

Marfan syndrome
Marfan syndrome is a heritable connective tissue disorder, characterised by increased length of the long bones, changes in the cardiovascular system (dilatation or rupture of the inner layer of the aorta), retinal detachment and joint and muscle problems.

Osteogenesis imperfecta (OI)
OI is a heterogeneous group of heritable connective tissue disorders. This group is characterised by brittle bones, dental aberration, hearing loss, blue sclera, joint hypermobility and reduced body length.

Spina Bifida (Myelomeningocele, MMC)
Spina bifida is a congenital developmental disturbance with defective closure of some of the spinal vertebrae and the spinal cord (the neural tube). This results in the formation of a hernia where spinal cord membranes with nerve tissue bulge out through the defect in the spine. It is a complicated and complex condition with varying degrees of neurological dysfunction such as paralysis, urinary and bowel problems, development of increased
fluid-pressure in the skull (hydrocephalus) and cognitive difficulties.

TRS National Resource Centre for Rare Disorders
Sunnaas Rehabilitation Hospital HF
NO-1450 Nesoddtangen
Tel.: +47 66 96 90 00
Fax: +47 66 91 25 76
e-mail: trs@sunnaas.no

Download a brochure about TRS.