Frambu Norway presentation for crdn summit 2016

1. Frambu
Resource
Centre for
Rare
Disorders

2. The Norwegian Advisory Unit on Rare Disorders
-
22 486 098 EUR (2015) in governmental funding
Frambu is one of nine Resource Centres for Rare Disorders
-
6 992 446 EUR (2015)
Main contribution is from governmental funding, gifts and fundraising
of increasing importance
17.10.16

3. 21.05.15
To ensure the provision of guidance and the dissemination of
knowledge and competence to the health-, wellfare-,
educational system and other service providers, and our
clients / patients

4. To provide cutting-edge expertise, knowledge and services to
individuals with a rare disorders, their family and the
professionals who work with them.

5. To enable children, adolescents, adults and elderly
with rare genetic disorders to live a life in harmony
with their condition, aspirations and needs.

6. Courses for persons with a
rare diagnose, their families
and network
Courses aimed specifically at
professionals
Frambu camps Counselling services
Research
National and international visits and
partnership
Apprenticeship Documentation and communicationStudy visits

8. 10 family courses evaluated in first half of 2015
Total perceived benefit
4,6 one week after 4,4 six months after
17.10.16

9. “Meeting professionals who are knowledgeable and available. Seeing
how they work with our children, and following lectures that increase
our knowledge. Being inspired and expanding our horizons with new
perspectives.”
17.10.16

10. 17.10.16
"It was with mixed emotions that we first arrived at Frambu. The
diagnosis became such an intense subject for several days. But we soon
got to know the other families and it was good to see older children with
PWS. We managed to get an idea of how things will be in a few years.”

11. 17.10.16
"Simply wonderful! With good help we managed to determine an
extremely relevant and important goal for our son and the family as a
whole. The enthusiasm of the group was obvious and we received great
tips and feedback.”

12. "It opened our eyes to the importance of also investing time in her sister.
It is difficult for a big sister to handle all of this, and we were reminded
how important it is to spend time together on her terms.”
17.10.16

13. www.frambu.no