The Norwegian Model

Lisen J.Mohr

Frambu

Norway

Rare disorders in Norway

• About 5 million people

• A rare disorder as pr. the Norwegian definition are having a prevalence of 1 pr. 10 000 or less pr. diagnosis. In Norway, that means less than 500 people pr. group.

• Some 30,000 people in Norway suffer from rare hereditary or congenital disorders.

• There are 16 different Resource Centres for Rare Disorders in Norway.

• Several of the other Resource Centres serveone or only a few rare disorders.

National plan for rare disorders

• An area of priority in governments plansof actions for disabled

• 1990-1993 and 1994-1997

• Followed up and developed to meet current needs

The Resource Centres

• Money for the centres are established via the state budget

• Services have been established for 300 diseases

• A reorganisation is on its way by the Ministery of Health

Specific resources for rare diseases are outlined

• Caregivers (parents)of patients with rare diseases are permited training allowance.

• These are designated for parents to attend courses at a resource centre for rare diseases.

• Neonatal screening is routinely performed for PKU and congenital hypothyroidism. A new screening programme is prepared to include 23 disorders will be in place from autumn 2011.

Individual Plan

• personal overall plan for service provisions

• Particular relevant to patients with a rare disorder

• The plan will contain an outline of the services the patients requires

The 16 Resource Centres

• Several give only service to one or two diagnoses

• Some are connected to a hospital and others to a centre for learning/developing disorders

• Some of the other centres are allowed to use the hotel accomodation at Frambu when they are arranging courses

Frambu offer assistance to about 100 different diagnosis.

Frambu is the only one with a hotel accommodation

What do we do at Frambu?

• Residential courses

• Communication and Documentation

• Outreach activities in users local community

• Research projects

• Summer camps

IMPORTANT

• To meet others who are able to understand them

• a very positive experience

• Contacts made at Frambu / or other resource centres have proved to be very important 

Friends

What do we offer to our users?

• No medical

treatment

• No individual

follow up

or therapy

But …

• Some medical examination

• Some advice

• Some ideas

• Counselling

• Adjustment for different activities

• Lots of experience

What can our users do for us?

• How to live a life when you have a rare diagnose?

• The best life in spite of having a rare diagnose

Different ways of telling their story

Information to the local community

• The most important people

• Concerning the everyday life

• Motivation

• Courage

They are a part of the society

Information

• About the diagnose

• A team of medical doctor, physiotherapist,nutritionist, special educator

• When a child is diagnosed someone from the team visit the parents

• They visit the kindergarden, school, work

Open line

Studies in Living with a diagnose:

• The Couple

• Adolecence

• Schoolchildren

Research projects

• Rare disorders in Norway: A in-depth study of 94 persons of 8 different diagnostic groups is carried out on the behalf of the Norwegian Directorate of Health.

• The aim of the study was to shed light on how these persons experience their own life situation and how they had been treated by the health services.

Rare Disorders Facing Mistrust And Lack Of Understanding

” Living with a rare disorder is largely a matter of being believed and taken seriously. For many people, the national centres are a decisive factor in determining the quality of the help they are given at local level," says Lisbet Grut.

SINTEF2009

• http://www.sintef.com

The situation in Norway for rare diseases

• We have to keep on working. Several says that it still takes long time for a rare diagnosis to be made. Many feel that they are left to face their problems alone.

• Because personnel in the general health services seldom or never come in contact with rare disorders it is very important to have networks and resource centers for rare disorders

The situation in Norway for rare diseases

• We have to keep on working. Several says that it still takes long time for a rare diagnosis to be made. Many feel that they are left to face their problems alone.

• Because personnel in the general health services seldom or never come in contact with rare disorders it is very important to have networks and resource centers for rare disorders

Thank you!