The Norwegian Way ..

To managing rare disorders

 Norway

• Around 5 million inhabitants.

• 30 000 people with a rare disorder.
• 16 different state-financed resource
centres for the country`s rare diseases
patients.
• Services have been established for 300
diseases.
• Money for the centres are established via
the state budget.
 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
• Frambu is the largest one – the only one
with a hotel accomodation
• Some of the other centres are allowed to
use the hotel accomodation at Frambu
when they are arranging courses
 Frambu,Norway

• In-house family
courses
• Outreach activities in
users local
community
• Research projects
• Information material
• Summer camps
Specific resources for rare diseases
are outlined
• Caregivers (parents)of patients with rare
diseases are permitted training allowance.

• These are designated for parents to attend

courses at a resource centre for rare
diseases.

• This contribute to the process of enabling

persons with a rare disease to access the
same work ,educational and social
opportunites as all Norwegians.
 Screening for rare diseases

• Neonatal screening is routinely performed

for PKU and congenital hypothyroidism. A
new screening programme is prepared to
include 23 disorders in the near future
 Prader Willi Syndrome in Norway

• Frambu is the Resource Centre

• Children born with the PWS diagnose are
offered growth hormone when they are about
one year old.
• The growth hormone is organised by the
hospital the child belongs to.
• This offer is usually stopped at the age of 18.
• But a project that has offered growth hormone
to adults with the PWS diagnose has showed
very positiv results.
• This offer will now be established for adults.
 Frambu – the Prader Willi
Syndrome

• A team of: medical doctor, physioterapist,

nutritionist and a special educator.
• When a child is diagnosed, someone from
the team visit the parents:
• They inform about the diagnose
• They inform about the diet
• They inform about a life not too focused on
food.
• Frambu offer courses about the diagnose
the Prader Willi syndrome.
• Children: courses with the parents and/or
other care givers.
• Young people and adults: courses with the
care givers and/or parents.
• Summer courses with children or youths
with different rare diseases.
• Future plans: The team will arrange more
courses for caregivers outside Frambu
• And/or by video conferences

• Anybody can call or send an email to

Frambu and will receive an answer.

• We cover the life span.